Hayden James Reagan

The Oregon Zoo

2011-07-31T15:12:00.000-07:00

Hayden's Auntie and Cousin Makayla came down for a visit last week. We all went to the Oregon Zoo. What fun! But boy was I exhausted after all that pushing and walking!!! Hayden had a good day, got to pet some goats, the weather was in the low 70s, most of the animals were out and visible, and we even rode the zoo train. =) Here are a few pictures...

Goodbye Ryan, We Will Miss You!

2011-07-13T08:52:00.000-07:00

Yesterday was Ryan's last day working with Hayden. Ryan has been Hayden's Physical Therapist since late 2008. Ryan will be sharing his PT wisdom with patients in a new job. We will miss him very much! Good luck to you Ryan!

Help Us Get A Siberian Kitten For Hayden

2011-06-21T08:42:00.000-07:00

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We want to get Hayden a Siberian Forest Cat, because they are really well known for being "hypoallergenic". I had never considered getting Hayden a cat before, because I have cat allergies, but after seeing him with the kitten a couple weeks ago, we really want him to have one. I dont know if he would have any allergies or not to a regular cat. I dont want to take the chance since he already has respiratory issues. I think the safest way to do it is to get him a hypoallergenic breed. You cant find these in shelters or newspapers. Many are mixed breeds or regular housecats. The surest way to get a full (hypoallergenic) Siberian kitten is to buy from a reputable breeder. This is expensive, but the price is pretty much the same across the country.

Barbara, the woman who runs the Tormodkot Cattery, In Ellensburg, WA, has been very kind and helpful in our search for a Siberian kitten for Hayden. She breeds both Norwegian and Siberian cats. She has also set up a donation link on her website toward the cost of Hayden's kitten. It is under the "announcements" page. Her website is http://www.forestkats.com/. Thank you so much for your help!!!

Thank you so much to the following people for your kindness and generosity!!!
Anonymous... $100 donation
Jennifer... $25 donation
Jackie... $25 donation
Susanne... $25 donation
Dawn... $20 donation
Jalyn... $150 donation

Angela... $150 donation

Anonymous... $20 donation

Kristi... $200 donation

One Year Later, Still No Dog

2011-06-19T11:40:00.000-07:00

Well, after about a year of hoping and waiting, the Make-A-Wish Foundation has not been able to make any progress on getting Hayden a companion dog that meets our "wish" request. We had wished for a smaller size dog that was already housebroken, had a good temperment, didn't bark much, had low exercise requirements (not needing more daily exercise then the house and the fenced in yard), and was especially cuddly so it would snuggle with Hayden during the day and sleep with him at night. I had no idea how difficult this wish would be to grant. I thought to myself "It's Make-A-Wish, they make miracles happen for kids everyday." Unfortunately, Hayden's wish is apparently not one of those miracles. I guess in the beginning, I kind of assumed that Make-A-Wish would try to pull whatever strings they could to make it happen. I had hoped that if they couldnt find a pre-existing dog that met our needs, they would create one. I guess what I mean is that, after doing some research I found a few small dog breeds that have all the general characteristics of what we are looking for. The only problem would be getting it housetrained and making sure that it has a good temperment. Which in my imagination, could have been done by a foster volunteer or even one of the service dog organizations. One year later, and the closest we've come is the opportunity to meet with someone from an organiziation who trains Labs for children. Labs are great dogs, very popular for service dogs, but are way too big for our needs. I cant help but be so very dissappointed.

Hayden is my son, and I love him so much, and sometimes I forget that everyone else doesnt love him or adore him the way that I do. I know that his lack of ability to connect with the outside world might not make him as endearing as some other wish children who motivated Make-A-Wish to move mountains to make their wish happen. I keep thinking about the boy in Seattle who wanted to be a Super Hero. Make-A-Wish got Hundreds and hundreds of people involved, including 25 motorcycle police officers and the entire Seattle Sounders football team. They even shut down I-405 and I-90 to make this wish happen. I find it truely amazing what Make-A-Wish did for this child and the boy saying at the end that "this was the best day of my life" brings a tear to my eye. I just wish I understood why for this child, anything was possible, but for Hayden, if it's not simple, it's not possible. It breaks my heart.

Anyways, we've decided that since there has been no progress on the dog wish, that we would change the wish to a Tempur Pedic bed. This just seems like a really boring wish to me, but Hayden will receive physical comfort from this so at least it is something. Plus, James and I couldnt afford to buy this for Hadyen on our own, so we will be grateful for him to have it. Make-A-Wish responded immediately that this wish would be no problem to grant and would probably be quick to fulfill. I guess these are the kinds of wishes they like best outside of a trip to Disney, because it is "easy" and doesnt take much time or effort to grant. I dont mean to sound negative, because I realize that this is a gift, but I am just sad that things didnt work out the way that we had hoped.

James and I are planning to buy Hayden a dog ourselves. We've actually talked about a cat too and would really like to get Hayden both a cat and a dog companion. I have this little fantasy in my mind of the three of them snuggling together all time like a small "pack". Best friends. I imagine Hayden's life changing with animal companions. His ability to respond and interact with the outside world can be enhanced with the love of an animal. Now, it is just a matter of being able to afford the puppy and kitten, being able to train them, and hoping for the best temperments. After looking online I think either an English Toy Spaniel, a Cavalier King Charles Spaniel, or a Maltese would be the best choice based on breed characteristics matching what we are looking for. These dogs are all really expensive though (+/- $1000). As far as a cat, I still think the best choice would be a Siberian, because they are reputed the best of the "hypoallergenic" cat breeds and are apparently very gentle and loving. These cats are also very expensive (+/- $1000). Plus we have to have the money set aside to spay or neuter the animals when we get them. I would love to be able to get both animals around the same time so that they can "grow up" together and bond with Hayden together.

Ahhhh.... Where is my genie in a bottle? I need a few wishes myself!

Blessed, Not Burdened

2011-06-17T19:28:00.000-07:00

Blessed, Not Burdened
By Kristi Mason

You weren't like other children,
And God was well aware,
You'd need a caring family,
...With love enough to share.

And so he sent you to us,
And much to our surprise,
You haven't been a challenge,
But, a blessing in disguise.

Your winning smiles and laughter,
The pleasures you impart,
Far outweigh your special needs,
And melt the coldest heart.

We're proud that we've been chosen,
To help you learn and grow,
The joy that you have brought us,
Is more then you can know.

A precious gift from Heaven,
A treasure from above,
A child who's taught us many things,
But most of all "Real Love".
.

Sunny Summer Day

2011-06-17T19:12:00.001-07:00

I Love My Cousins!!

2011-06-17T17:22:00.000-07:00

Every once in a while Hayden gets a letter in the mail. His cousin Makayla is so sweet, and loves him so much! She writes him letter's at school and then brings them home to mail them. Last week Hayden had a fun time painting a letter back to her and his two other cousins. It took him 3 days to do these letters. The first day he got all the names written, before he started having too many seizures and then had to stop. The second day he got all the pictures painted in the middle. One the third day he got to write I you on each of them. I hope the girls are surprised when they receive their mail from Hayden!!! =)

Kitty Kat

2011-06-13T22:54:00.000-07:00

Hmmmm... A cat for Hayden? I've never really considered the possibility, because I have an allergy to cats, but after seeing Hayden with this kitten this weekend, I might be changing my mind. Hayden was interested in this kitten, and it seemed to love laying with Hayden. I think that maybe Hayden's raspy rumbly breathing pattern sort of sounds like a purr and the kitten just layed on his chest and seemed comforted by it. It was so cute! Hayden really seems to respond well to animals. I really want to get him a companion pet. Getting the right dog has been difficult, because of the requirements we need. Maybe getting a cat, which require much less training, and are more independent would be a better idea. I've been looking online at "hypoallergenic" cat breeds. I'm particularly interested in the Siberian cat breed. They all seem to be really expensive though ($700-$1500). I grew up with cats and never really had a problem with them until I moved out. Maybe I would get used a cat and not have the allergy problem if I was around them. I really would like to get a "hypoallergenic" cat though, because I think it would be safer for Hayden and his respiratory issues...

Our Sick Little Boy

2011-05-25T10:49:00.000-07:00

It has been a really rough month for Hayden. It all started with a long seizure, a fever of 105.0 and a trip to the ER. Two doctors visits later, docs think that he had roseola (a common childhood disease). The fever lasted for about a week then he had a very mild rash for a day or so and it was gone. Then we noticed he was "twitching" alot. Wasnt sure what was going on there, but his belly seemed to be tender when we pressed on it, so I thought maybe he was dehydrated and constipated from the high fevers he had. I gave him lots of extra laxatives and finally got some really good stools back. I took him to the doctor again to make sure that he didnt have appendicitis or something. Doc did a quick full physical exam and said no, it was probably just constipation as I thought and to keep him hydrated. Then, once that was "resolved", Hayden started to have increased seizures and increased temp, pulse, and respirations at night, plus, he wasnt tolerating his feeds. Almost every night between midnight and 3:00am Hayden would wake me or James up with rapid breathing of 60-70 breaths per minute, his heart rate of 160s-190s, and a temperature of 102-104. Then he would stay like that for the rest of the night. We'd give him dose after dose of medications that would often take hours to finally calm him down and put him back to sleep. We've needed to put him on oxygen most every night. Then, during the day, he would be sleepy and vitals would all be relatively normal. It is so frustrating for me as a parent because I dont always know what I should do. Do I take him to the doctor again, even though during the day he's not showing any of the problems we are seeing at night??? I didnt want them to start thinking "Oh, not her again". Which brings us to the present, where Hayden has now started showing signs of a cold/flu. Coughing, sneezing, runny nose, fever, lots of green eye goop, and still not tolerating his feeds very well. I took him to the doctor again yesterday and she found that Hayden now has an ear infection. I asked if we could get a chest xray done to check for pneumonia. The xray came back showing mild pneumonia in the right upper lobe and moderate pneumonia in the left lower lobe. Poor Hayden. He has had a rough, rough, rough month. He got an injection of rocephin in the office and we will go back today for follow up. Keep him in your prayers that he will start feeling better soon!!!

Fun Day!

2011-04-22T16:03:00.000-07:00

Hayden had such a WONDERFUL day today with Amber. They started out with an oatmeal bath (because Hayden has a mysterious pale pink rash all over his body). Amber wasnt sure if it itched or not, it's hard to tell with Hayden, so she thought of giving him a soothing bath with oatmeal this morning. Then it was onward to all the fun activites! They colored, they dyed Easter eggs, they baked Easter bunny cookies, and played with plastic eggs and the cutest little chick that chirps when you hold it that Amber got for him! What a fun day! Thank you so much Amber!!!

Bunny Ears!

2011-04-14T15:58:00.001-07:00

Hayden's Going to be a Big Brother!

2011-03-01T19:46:00.000-08:00

After several early miscarriages, James and I are expecting again and are hopeful that this baby is going to stick around to meet us all. We had an ultrasound today and saw the baby's heart is beating at a healthy 163 beats per minute! They said that I am 7 weeks and 4 days along and will be due October 14, 2011. Everything looks good so far and we are very excited. Keep your fingers crossed with us that I will carry this baby to term and will deliver a healthy happy baby sister or brother for Hayden!

Update 4/13/11 (14 weeks)

We had another ultrasound today and everything looks good so far! They said it looks like we might be having a baby girl, but of course, they cant guarantee that especially this early on. I'm keeping my fingers crossed though. I really would love to have a little girl. But, so long as the baby is healthy I dont care too much! My next ultrasound will be at 20 weeks. I am almost 14 weeks along now. So exciting!!!

Update 5/25/11 (20 weeks)

We had our full fetal anatomy screening ultrasound today. It is a girl!!!! We are so excited! She is growing appropriately and measures exactly at 20 weeks 0 days today which coincides exactly with my original due date of October 14, 2011. There were only two small variations found during this scan. The first is that it appears she has a small leak between the ventricles of her heart. The doctor said not to worry as this often corrects itself over time. The second is that they saw some choroid plexus cysts in her brain. This is where the cerebral spinal fluid is made. The doctor said that this also will most likely correct itself in time too. We will have another ultrasound in 4 weeks to see if these things have gotten better. Anyways, her heart was beating strong and she otherwise appeared normal. There is a 4D picture that we got, although it's not very clear, she looks pretty lumpy in it! =) I think she looks alot like Hayden and daddy already!!!

This 4D ultrasound was of Hayden at 30 weeks (as they get older the picture comes out better) But they look alot alike aready dont you think (minus the lumps)??? =)

Update 6/22/11 (24 weeks)

We had another ultrasound today and great news! Everything looked normal! They couldnt see any hole in her heart or cysts in her brain this time around! Yay! It looks like those things might have already resolved themselves! I am feeling pretty good. Getting bigger by the day. I've gained 15 pounds so far, but it feels like 100. I'm definately out of shape. I get winded walking up the stairs in my house! lol. I have been feeling her kicking and moving everyday now. She tends to get really active in the evenings. I love her so much already! I cant wait to meet her and pray that she is born healthy and happy.

Playtime in Pictures

2011-02-01T06:51:00.000-08:00

These are all several pictures that Hayden's caregivers (Amber and Mercedes) have taken of Hayden over the past couple months. Lots of fun playtime. What a blessing for Hayden!

Christmas 2010

2010-12-28T15:51:00.001-08:00

My Response. I'm Angry.

2010-12-27T16:10:00.000-08:00

I know that this letter is super bitchy, but I know I wont change her mind, so the immature angry side of me wants to just tell her off and let her know what I think. I am going to send this to her, but obviously I wont be expecting any sort of response. In the event that Hayden passes away from something that could have been prevented, I will be sending her letters every year for the rest of my life so that she never forgets the part she played. I'm pissed that these people make life altering decisions and then go home to their lives and never have to answer for the negative outcomes.

My response letter back to her:

December 27, 2010
Dear Karen Wilson,

I received your response to my letter dated December 20, 2010, and I cant say I am surprised by your lack of compassion for Hayden’s needs. I’m sure you couldn’t have risen to the position of power you are in without a little ice on your heart. You seem to have completely missed the point of my letter, and frankly, I feel your response was insulting. I feel as if you have a personal bias against me since you are the one who reported me to the Child Protective Services earlier this year for child neglect. You did this at a time when I was desperately asking for your help, rather then provide us with services that Hayden needs and qualified for. At that time, several people I know wrote letters of support for me. I have included some copies of those letters so that maybe you can see that I am not a bad person, a bad mother, nor am I trying to take advantage of the system. We are a real family who have a real need for the services that you have the power to provide.

My son has a fundamental right to life. He has a reasonable right to be safe every minute of every day. He has a legal right to receive the services that will keep him living safely at home, rather then in an institution. Even if the fact that he lives and breathes doesn’t fit in well with the State’s budget plan. Who will be held accountable when Hayden dies from a preventable cause? I will make sure someone is held accountable.

You made a point of detailing that Hayden is provided with 86 hours of MPC per month. As I said in my original letter, these hours are not very useful. According to Hayden’s ISP “PC hours are for Locomotion in and outside room, and bed mobility only.” So your suggestion in your letter that I move my respite or MPC hours to allow for longer sleep periods makes no sense. Hayden needs and deserves safe care by someone who is competent and legally qualified to provide it. His medical needs include constant seizure management, airway management with suctioning, medication management and administration several times a day, tube feedings with a ketogenic diet, oxygen saturation monitoring with oxygen supplementation as indicated, blood glucose and ketone monitoring, daily physical, occupational, speech, and vision therapy, range of motion, bowel care, and skin care precautions since he is quadriplegic. None of these things are allowed with MPC, so how does that help him or me? The caregivers are allowed to perform these tasks with nurse delegation under respite care guidelines. Hayden’s ISP states “Agency caregivers must be providing respite care in order to assist with any tasks other then Locomotion in and outside room and bed mobility.” Hayden’s care needs are comprised of tasks which can only be safely performed under RN supervision. Because of this, Hayden needs either more nurse delegated respite care, or a skilled nurse to provide his care. If he was living in an institution, he would be getting around the clock 24 hour skilled nursing care.

You were sure to point out that all three (3) year old children need to have someone with them and that customarily a parent will pay for child care. Unfortunately, Hayden wasn’t born healthy like most all other three (3) year olds so his needs are not comparable to the average child, and it is inappropriate to do so. According to the US National Library of Medicine, National Institutes of Health, and the Mayo Clinic, a toddler ages one (1) to three (3) years old should be able to feed himself neatly with minimal spilling, walk and run, walk up and down stairs, dress himself with minimal help, use the toilet during the day, speak sentences of 3 to 5 words, play independently or with other children, understand and follows simple directions. Hayden can do none of those things. He requires Total Care for all of his everyday personal needs in addition to his extensive medical needs. Even during all of his many stays in the hospital, Hayden has never be allowed to be left alone in his hospital room as other sick children are. He requires someone to be within a few feet of him at all times. If ever I’ve needed to leave his bedside, the nurses have always placed someone else at his side until I return.

I’m sure I am not the only parent who has been subject to your cold politics and condescending attitude. It is inappropriate for you to imply that I am trying to somehow shirk my parental responsibility for Hayden by asking for more respite care. I am not a “dead-beat” parent. I do not deserve to be spoken to as if I am trying to abuse the system. I provide Hayden with every possible provision that I am able to provide including food, water, clothing, housing, medical insurance, my love, and my time. I would give my life for my son. Maybe you will just never know what that feels like. You make life altering decisions from behind your desk in your office, and when it is the life of a child, those decisions should not be made lightly.

Sincerely,

Angelique Vines

DDD Response

2010-12-27T15:59:00.000-08:00

The response I received from the DDD supervisor is below. It seems that she never even heard what I was trying to say in my letter. This makes me so angry!!!

Dear Ms. Vines,

Thank you for your letter I received on December 9, 2010 in which you discuss your son Hayden. The Division of Developmental Disabilities (DDD) currently provides Hayen with 1272 hours annually of in-home support. These services comprise 86 hours of Medicaid Personal Care (MPC) a month and 240 hours of respite anually. DDD rules require that respite not occur while the parent is at work.

All three (3) year old children need to have someone with them while their parents are at work or when they are not available. Customarily, a parent of a three (3) year old child pays for child care either in their own home or in day care centers. Another possibility you may wish to consider is paying qualified providers to care for Hayden while you sleep or work, including private paying for an agency to provide child care in your home. You may also consider moving your respite hours or MPC hours to allow for longer sleep periods for you. Finally, you may consider accessing children's services for additional service, including respite.

Sincerely,

Karen Wilson
Departement of Social and Health Services
Developmental Disabilities Administrator 1
Division of Developmental Disabilities

Hayden's Pictures with Santa!

2010-12-13T13:23:00.000-08:00

2010

2009

2008

My (long!) Letter to the DDD

2010-12-06T17:35:00.000-08:00

...

DDD Supervisor and/or Regional Administrator,

I write this letter in regards to a recent denial we received to an Exception to Rule request submitted by our case manager, Robert Roper. This request was for 350 hours of respite in addition to the 240 hours a year generated by the CARE assessment for my son, Hayden James Reagan. I would like to point out that 590 hours a year would only equal out to about 11 hours a week, which hardly seems unreasonable, and in fact is still no where near adequate for our needs.

The ETR was denied because “Your situation does not differ from the majority.”

I am very curious to know what needs this comparison group had? Waiver services and supports are supposed to be planned and implemented according to each participant’s unique needs. Maybe you compared Hayden with other children who also have quadriplegic cerebral palsy? This is definitely a major issue requiring a great deal of time and energy to provide the needs related to this diagnosis. Hayden might or might not differ from the “majority” with respect to his need for total tube feedings, daily skin care regimens, daily bowel care regimens, daily physical therapy, occupational therapy, speech therapy, and vision therapy regimens. Because of the quadriplegia, profound mental retardation, and blindness, Hayden is totally dependent in all aspects of his physical existence. This alone is an exhaustive responsibility for any caregiver to bear, however, he may not “differ from the majority” of other children with this same diagnosis.

Do the parents of this “majority” also have to contend with more than 25 potentially life threatening episodes each and every day? Hayden’s quadriplegia is compounded by intractable and uncontrolled epilepsy with seizures occurring 25-100 times a day with which his airway is frequently compromised. If not from a forced suffocation into the mattress (or whatever he happens to be laying on), then by choking himself to death on his saliva during seizures. He needs to be “rescued” constantly with position changes, oral suctioning, and medications. His life depends on these things.

It is only through constant 24 hour a day vigilance in care that Hayden has not yet lost his life.

Do the parents of this “majority” also work full time outside of the home? A child as severe as Hayden with daily life threatening events can not go to school or be placed in daycare. I work night-shift to help support my family and provide Hayden with private medical insurance. I do not have the luxury of a day-shift job, because there is no care available for Hayden during the day. If you’ve never worked a night-shift job, you can never understand the chronic fatigue that accompanies this shift. Not only is sleep deprivation a major issue, but studies have shown a negative effect on the medical, emotional, psychological, and social health of individuals who work at night. The negative effects of this shift weigh heavily on all aspects of my life.

Do the parents of this “majority” have local help to assist them with caring for their high needs child? We do not. Maybe it would surprise you to know that people aren’t as willing or able to help care for a child like Hayden as they might otherwise be for a healthy child. No one wants to be responsible for a child who could die in their care. I don’t really blame them. I wouldn’t make that choice either if I had one.

Do the parents of this “majority” get more then 3 consecutive hours of sleep on any given day or night? How is a person expected to function without adequate sleep? I’ve spent the last three years of my life with severe sleep deprivation. Is it too much to ask for 5-6 straight hours of sleep? Please try to understand that for every hour of sleep I get, Hayden loses an hour of care (therapies, turnings, feedings, stimulation) he should be receiving. And, for every hour of sleep I’m not getting takes away the energy I have to provide Hayden with appropriate and safe care. I feel like I’m in a lose/lose situation.

I often compare my situation loosely to that of the mother of a newborn child. Never mind that her situation is emotionally elating and joyous, where as mine is a daily heartbreak. This mother is often exhausted by the constant needs of a newborn child who keeps the mother up and down all day and all night. She is extremely exhausted but knows that this wont last forever. This child will eventually allow her to sleep through the night as he grows older and her life will then return to “normal” and she will return to work. My future holds no such promises, until of course, my son dies, at which point, you won’t have to be bothered by my pleas for help anymore.

I respectfully request that the decision for more respite hours be reconsidered and re-evaluated. With the seizures and chronic aspiration being a constant threat on Hayden’s life, he should qualify as “medically fragile” as well as placed in a classification of “exceptional” for level of care regardless of his age. Please keep in mind that the MPC hours available to my son do not allow for any of the care he needs except transfers and positioning. Therefore, these hours should not be considered relevant to the need for more respite care hours, since his care is much more involved then what MPC hours allow for.

I would also request that you take into consideration that because I work, I pay taxes and I provide Hayden with private health insurance which currently pays for almost all of his medical, dental, vision, and therapy expenses. If I lose my job, or Hayden gets placed into an ICF/MR because of my exhaustion and inability to safely care for him, then Medicaid will not only become responsible for the burden of Hayden’s medical expenses totaling thousands of dollars each month, but will also have to pay for the very expensive cost ($100,000 - $150,000 a year) for Hayden to live in a long term care facility.

Sincerely,

Angelique Vines

Hayden's 3rd Birthday

2010-11-08T12:42:00.000-08:00

Hayden is 3 years old now!!!! I cant believe how the time has gone by can you?! He's still growing like a weed. Getting so big! Hayden got lots of great stuff for his birthday. My favorites are some of the leapfrog toys. He got the My Pal Scout , which is FANTASTIC!!! I used the USB cord and downloaded his name and some favorites into the toy and now when you push the buttons it says his name and all kinds of fun things. I love it!! He got the Learn & Groove First Words Radio which is great because the children's voices it uses are great, and Hayden has repeatedly smiles when listening to them talk, LOVE IT! He also got the Learn & Groove Alphabet Drum which is ok, but not as fun as the other two. He also got a puzzle, some toddler crayons, fingerpaints, the Buzzy Bumble Bee Pillow Pet, some really cute clothes, and shoes of course.

(I dont know why daddy always has to smear frosting on my face every year!!! But, I do get to taste it after that and it's yummy!)

A Few Pictures

2010-10-24T19:33:00.000-07:00

These are some pictures that Hayden's caregiver, Amber, took of Hayden last week. So cute! My favorite is the one with him holding the grasshopper! Thanks Amber! =)

Wish Ideas???

2010-10-03T15:52:00.000-07:00

As you know from an earlier post, Hayden was approved for a wish from the Make-A-Wish Foundation (of Oregon) . We really wanted Hayden's wish to be a therapy dog. It's been a few months now, and it doesn't seem like Hayden is going to be able to get this wish. The only option they've really come up with so far, appears to be getting a dog from the Humane Society (or something similar), but they cant assure that the dog would even be house-broken. I definately dont want a dog that I would have to try to train myself. That would be a disaster. I really wanted Hayden to get his dog from this organization called 4 Paws For Ability . They train service dogs for disabled children. Although I've told them about it, It doesnt seem like Make-A-Wish is willing to go in this direction, maybe because it is located out of state, I'm not sure. Since this seems to me like the best option for us for the dog, I'm considering trying to fundraise money on my own to get Hayden's therapy dog through them. I think that this will cost anywhere from $3,000 to $5,000. I will write more about this later if I decide to do it on my own, and I hope that I will be able to get some of you to support me with my fundraising effort! =)

I have been trying to think of what else Hayden's wish could be, if it isn't a dog. I'm stumped. Anyone have any ideas? Something that would really benefit him? The only other idea that comes to mind is comfort items, like a memory foam bed or pillows, fuzzy blankets, soft chair, etc... But those things dont seem very exciting. I do always want for him to be the most comfortable we can make him, so it would be better then nothing I guess. I need suggestions!!! Please leave comments on this post with your ideas if you have any...

Pool Time

2010-08-17T08:44:00.000-07:00

We've had some really hot days here the past few days and I decided to buy Hayden a new little baby pool to lay outside in. It has soft padding for him to lay on and the water was nice and cool (but not too cold!). He loves kick-kick-kicking the water and splash-splash-splashing with his hands (with help from mommy of course!) The exposure to the sun will help him with his vitamin D levels too since he is chronically low and always needs to take supplements.

No Cavities!!!

2010-08-05T17:44:00.000-07:00

I took Hayden to the Dentist on Monday. I have been taking him every six months since he was one years old. He didnt have any cavities, but he did have quite a bit of plaque on his molars that he had to scrape off. I decided that I am going to start taking him every four months now, and his dentist agreed. Here's to a good set of chompers! =)

Mr. & Mrs. Reagan!!!

2010-07-13T22:59:00.000-07:00

James and I are now husband and wife!!! Yay! All I have to do now is legally change my name so that James, Hayden, and I will all share the same last name. I cant wait to unify our family in that way. Here is a few pictures from our wedding July 3, 2010...

You can look on my facebook page for more pictures!

Otto-Bock High-Low Chair

2010-06-25T23:00:00.000-07:00

Hayden got his newest piece of equipment today. An Otto-Bock high-low Spider chair. This chair will be great because it can be set up high so that Hayden can be sitting up at our level, or set low so that he is closer to the ground for play. It has a tray that attaches, a tilt feature so that he can lay back, and it is on wheels so it is easy to move around the house. I'm very excited about this as a new seating option which will help us keep Hayden included when we are in the kitchen cooking, eating, or visiting.

Make-A-Wish

2010-06-25T21:23:00.000-07:00

We received a letter today from the Make-A-Wish Foundation. Hayden was found to be eligable for a wish!!! Yay! I am so excited for what this will mean for him. The letter said that our wish team volunteers will be in touch within the next few weeks to meet Hayden and determine what his wish will be.

Once the wish is decided on it has to be approved by the foundation and Hayden's physician. The goal will be to grant Hayden's wish within the next six to nine months. I am so so so excited for Hayden. I cant wait to talk to the voluteers about getting a special dog for him. A companion that can touch him and reach him on a level that is unique to the love of a dog. I hope it doesn't take the whole six to nine months though!

What a mixed blessing. I am completely thrilled that Hayden will be granted a wish, and then on a deeper level, I'm sad that he is sick enough to qualify for one...

We Have Caregivers!

2010-06-24T07:40:00.000-07:00

Just a quick little update, I will write more later when I have time. We finally got the caregiver hours approved and our first day was on Tuesday. Hayden will have a caregiver for approx. 6 hours a day 4 days a week. We will be having two caregivers that split these days with him. We've met both of them and they are very nice and attentive with Hayden. It is going to be so wonderful for him to have this one on one attention!

VNS Is On

2010-06-07T19:10:00.000-07:00

Hayden had his post-op appointment at the neuro clinic today. His incision is healing nicely. It doesnt seem to bother him anymore. The nurse practitioner that saw him turned on the VNS while we were there. She programed it at the lowest setting. It will cycle 30 seconds on and then 5 minutes off around the clock. It was pretty cool how she was able to program it. She had a handheld PDA-looking device that had a wand like remote connected to it. She held the wand over his chest and it transmitted and received data from Hayden's VNS. Then she was able to put in the settings through the PDA and then download to his VNS through the wand. Technologly is so amazing sometimes. I hope this helps. He doesnt seem to be having any side effects so far since it's been turned on. We will have to go back every few weeks to have the settings increased and adjusted.

Hayden's neuro doctor sent the medical records and application forms back to the Make-A-Wish Foundation today. Hopefully they get back to us quickly once they review the records to determine if Hayden qualifies. I really really really wish this for him...

Home From Surgery

2010-05-25T14:35:00.000-07:00

Hayden is home from the hospital today. The surgery went really well. He is such a trooper. Tylenol managed his pain pretty much the whole time we were there, but when I got him home he was whimpering, and I could tell he was uncomfortable. Probably because he didnt have to move much in the hospital so it didnt hurt as much. Now that I brought him home I had to lift him in and out of the wheelchair and then in and out of the car, etc. I gave him a little oxycodone and he seems to be getting more comfortable. He has two incisions. One on his left chest, and one on the left side of his neck. You can see the bulge of the implanted device. It looks so big inside him. I'm sure as he grows and we get used to it it wont seem so weird. I cant submerge him under water (bath) for 3 weeks, but that shouldnt be a problem because we dont give him deep baths anyways. Just enough water to get the job done. Here are a couple pictures...

Post-Op Day #1

Post-Op Day #2

2 Weeks Post-Op

Surgery on Monday

2010-05-23T13:19:00.000-07:00

Hayden will be going in for surgery on Monday. A Neurosurgeon (who told me that he is the top Neurosugeon for this particular surgery in the state of Oregon) will implant a Vagal Nerve Stimulator (VNS) which will hopefully help with controlling the seizures. As I explained in a previous post, "A VNS is supposed to help prevent seizures. It is sort of like a pacemaker in the sense that it sends a mild pulse of electrical energy to the brain via the vagus nerve. It is placed under the skin on the chest wall very much like a pacemaker for the heart is. The doctor told me that it can take months to a year before a reduction in the number of seizures is seen, however, the duration of the seizures should shorten within a few weeks after implantation. Hayden still has 25-100+ seizures per day. It almost seems like it would be impossible to ever stop them or get them completely controlled, but it sure would be nice to find a way to get them down at least below 25 seizures per day. Maybe someday... (that seems to be my thought for everything anymore!)"

Make-A-Wish

2010-05-17T12:52:00.000-07:00

I applied for Hayden to get a wish from the Make-A-Wish Foundation. I keep hearing other mom's from my support groups talking about how their child was granted a wish. Many of them went on trips to Disneyland or Morgan's Wonderland. I know Hayden wouldnt get any benefit out of a trip anywhere, he is not aware of the world around him. The one thing I can think of that would truely reach Hayden is for him to have a companion. A dog. A therapy dog. I've seen how Hayden responded to my sister's little chihuahua puppy Paris when we went there to visit. This little puppy was able to reach Hayden in his little world. I would love for Hayden to have a dog of his own. I dont want to risk picking out a dog myself. You never know what kind of temperment they will have. I know I wouldnt be good at "training" a dog. The only way it would work is if we got a dog that was trained already. A dog that would cuddle with Hayden and be a part of his world. That is what I wish for him. I am so hopeful that they will grant this wish. Keep your fingers crossed with me!

Hayden and Paris

EEG and MRI

2010-05-17T00:32:00.000-07:00

We had Hayden at Doernbecher's for a 48 hour video EEG and an MRI of his brain. He had lots of seizures his first 24 hours which was good since it showed them what a regular day was like. The second day he was pretty sleepy but still had a fair amount of seizures so all in all it was a pretty good sample of his seizure activity. After the EEG leads were removed, they took him down for the MRI. He had to have deep sedation (general anethesia) so that he would stay still (not seize) during the scan. When he came back to the room, I noticed that his tongue was swollen on the right side, but he was breathing ok so I said I was fine with taking him home. The next day it was looking white/blistery on the right as if he had bitten it so hard that he may have stopped circulation to it for a time period. I'm wondering if it was caused by the way they intubated him (See pictures below, but they are kind of gross looking! Sorry!). He cried a little bit after we were home and I had to give him Tylenol. I'm pretty sure it hurt him. I can only imagine that a sore on your tongue like that would be pretty painful. The dead skin is starting to come off now, so I think it is healing, but I'm sad that my little guy has gone through so much! Now we've decided to go ahead with the VNS implant surgery, so it is scheduled for May 24th. Only one week from today. My poor baby. This will be his fifth real surgery and his 6th time under general anesthesia. Will he ever know what it's like to not have painful things happening to him in his life??? I hate that I have to hurt him to try to help him.

Hayden's New Stander

2010-04-21T17:03:00.000-07:00

Hayden sure looks small in his new stander! We ordered the next size up because he will grow into it, even though it's a little big right now. He was quickly outgrowing the old one (see pictures below). You can sure tell how much he's grown by just comparing pictures. He's so cute. This new stander has a lot of nice extra supports to help him stand upright.

April 2010

January 2010

July 2009

New Letter from Sen. Maria Cantwell

2010-04-15T17:05:00.000-07:00

After the last letter I received from Senator Cantwell, I was surprised to find a new letter from her in the mail box today. As it turns out, she was very helpful and played a big part in the recent turn of events with the waiver services...

Dear Ms. Vines,

In response to my inquiry on your behalf, I have received the enclosed correspondence from the Department of Health and Human Services. I hope you find the agency's response to be helpful.

I appreciate you bringing this matter to my attention and giving me the opportunity to assist you in resolving this issue. Please feel free to contact my office in the future, should you need assistance with another matter involving the federal government.

Sincerely,
Maria Cantwell
United States Senator

After reading the response below, I believe that it was this inquiry that she made to the Center's for Medicare & Medicaid on Hayden's behalf that ultimately tipped things in Hayden's favor and got him approved. Thank you so much Senator Cantwell!!!

Dear Senator Cantwell:

This is a response to your March 8, 2010, inquiry on behalf of Hayden James Reagan. The basis of query was to ascertain the possibility of obtaining in-home nursing care or 1915(c) Home and Community Based waiver services, for Hayden, who reportedly is extensively medically comprimised.

Historically, Hayden was assessed for placement on one of the four Mental Retardation/Developmental Disability waivers, at which time he was placed on the waiting list. The Centers for Medicare & Medicaid Services (CMS) has contacted the State of Washington regarding Hayden's case. During this investigation it was learned that the Washington State legislature increased funding for the Mental Retardation/Developmental Disability waivers. Thus on March 29, 2010, Hayden was cleared for the Basic Plus waiver. The state of Washington case manager will be contacting Hayden's mother, Angelique Vines, to begin the re-assessment process and enrollment in the waiver. This process is expected to require thirty days.

If Ms. Vines requires additional information, she may contact Mr. Dave Langenes at the Division of Developmental Disabilities. Mr. Langenes is aware of this inquiry.

Sincerely,
Carol J. C. Peverly
Acting Associate Regional Administrator
Division of Medicaid and Children's Health Operations

Surgery as an Option?

2010-04-13T23:31:00.000-07:00

I took Hayden to his Neuro appointment yesterday and we talked about how the number of Hayden's seizures isnt really changing but the intensity of them seems to be increasing. He seems to gag and wretch a lot with his seizures now and they strain him so hard that I'm noticing a bluish hue around his nose and mouth more often (indicating decreased oxygen levels). We adjusted a couple of his medication doses and talked about other alternative treatments. We are planning to admit Hayden to the hospital in the near future to do a 24 to 48 hour video EEG as well as get an MRI of his brain. It has been 2 years since we had an MRI done and a year since the last EEG. The doctors will then look at the information and see whether Hayden is a surgical candidate. Sometimes if the seizures are coming from one or two specific places in the brain, removing those places can stop the seizures from happening. The last time we had the EEG and MRI done the seizures were coming from all over the place and surgery wasnt an option. I dont know if anything has changed or not. If he's not a surgical candidate then we will talk about implanting a Vagus Nerve Stimulater (VNS). A VNS is supposed to help prevent seizures. It is sort of like a pacemaker in the sense that it sends a mild pulse of electrical energy to the brain via the vagus nerve. It is placed under the skin on the chest wall very much like a pacemaker for the heart is. The doctor told me that it can take months to a year before a reduction in the number of seizures is seen, however, the duration of the seizures should shorten within a few weeks after implantation. Hayden still has 25-100+ seizures per day. It almost seems like it would be impossible to ever stop them or get them completely controlled, but it sure would be nice to find a way to get them down at least below 25 seizures per day. Maybe someday... (that seems to be my thought for everything anymore!)

I Love You

2010-04-06T13:42:00.000-07:00

I love the way you smell
I love those moments when you listen intently to my voice
I love your wild hair
I love to kiss you on your chubby cheeks and little lips
I love how soft and smooth your skin is
I love your super long eyelashes
I love how perfect and peaceful you look when you're sleeping
I love you because you make my heart feel more alive then ever
I love you for showing me the meaning of love
I love you for helping me not to take everyday life for granted
I love the feel of your hands as they barely curl around my finger
I love putting your hand on my face as I smile or talk to you
I love your crooked smile
I love the rare sound of your voice, even when you cry
I love when you open your eyes wide enough to see how pretty they are
I love talking to you with my lips on your lips
I love that I can cuddle you for hours at a time
I love that you love to "run" your feet
I love it when you yawn and I always say "that was a big yawn buh-buh"
I love it when you wake up in the morning to my kisses and do a full body stretch!
I love when you "mmm mmm" softly when daddy kisses you with his prickly face
I love you.

Hayden Was APPROVED!!!

2010-03-31T14:21:00.000-07:00

Hayden's caseworker at the DDD received notice yesterday that HAYDEN WAS APPROVED for the Basic Plus Medicaid Waiver!!! He told me that we should really feel blessed because this hardly ever happens. I am in shock. I cant believe that all the fighting I've done for Hayden has actually paid off. This is a BIG DEAL. The Basic Plus waiver provides personal care services, nurisng care, respite services, funding for PT, OT, and Speech therapies, equipment, transportation, and other medical expenses. Of course, my private insurance will pay for most of Hayden's expenses, but if there is something that Hayden needs that my insurance doesnt cover then the waiver may pick up the expense (such as the nursing/respite care services).

I am still in shock. Wow. I cant help but wonder what all the factors were that contributed to this final approval. Did the letters I wrote to the legislators help? Or all the people I talked to? Or was it just the fact that I am unable to keep up with all of Hayden's needs anymore. Who knows. I am sure that he wouldn't have gotten anything though if I hadn't made such a fuss of it all the time. I AM JUST SO THANKFUL. Wow again. Wow. It feels like a miracle has happened. I am so excited for Hayden. He will start to know what it feels like to have a regular schedule with therapies everyday. He will have so much more stimulation for brain development. I will have sleep!!!

I asked his caseworker about how the case-manager reported me to the CPS and if he had heard anything about the status of the investigation. He told me that he had called the CPS office yesterday for an update but wasnt able to get ahold of the person handling Hayden's case. He was going to call again. He told me he was going to talk to them about this new change in our situation (getting approved for the waiver). I am still anxiously waiting to see what will happen as far as the CPS investigation goes. Thank you to everyone who sent me personal reference letters of support. I have made a copy of each one of them and they are ready to be given to them when they come.

Easter Bunny

2010-03-26T21:46:00.000-07:00

We took Hayden to the mall tonight to sit on the Easter bunny's lap. Unfortuantely, Mr. Easter Bunny had a difficult time holding Hayden up and we couldn't get a picture that didn't look awkward. Oh well. =)

This is Hayden with the Easter Bunny in 2008. He was so small then!

Disappointing Letter from Sen Maria Cantwell

2010-03-25T16:24:00.000-07:00

Dear Ms. Vines,

Thank you for your recent letter regarding the need for in home care for your son. I appreciate you taking the time to share your concerns.

Unfortunately, as a United States Senator, this matter is out of my jurisdiction because it does not fall under the authority of the Federal government.

As a courtesy, I have forwarded the issue of concerns to the Director with the Center for Medicare and Medicaid Services. I have asked that agency to contact you directly with its response. I hope this will be helpful in resolving this issue.

I sincerely regret that my office is unable to assist you with this situation. I appreciate you bringing this matter to my attention, and hope you will not hesitate to contact me in the future if I can be of assistance with a matter involving the Federal government.

Sincerely,

Maria Cantwell,
United States Senator

What more can I say? Nothing seems to be going our way. What a complete disappointment.
...

Kimba Spider "High-Low" Chair

2010-03-23T22:46:00.000-07:00

Well this is the newest piece of equipment that we are trying to get for Hayden. It is a "High-Low" seating system called the Kimba Spider. It is basically like a high chair except a lot more supportive. It also has a tray and some other options that are not shown on this tester model. He will have a foot rest just like on his wheelchair so his feet aren't just hanging there. It will be nice because it is table height when it is elevated and then almost to the floor at it's lowest level. This way Hayden can be with us and be a part of more things we are doing. I cant wait to get it. We are waiting for insurance approval of course. I hope there isn't a problem there. I cant handle anymore problems!!!

The DVD player we got Hayden for Christmas to play disney movies!

In Memory of Jordan Emily Rowe

2010-03-23T17:59:00.000-07:00

Jordan Emily Rowe

Today it has been one year since Jordan went to heaven with the angels. We miss her and think about her often. She and Hayden had very similar medical conditions. Hayden and I sent some red balloons up to heaven, so that she knows we will never forget her. She was a darling, beautiful, special, wonderful, lovable, sweet, precious little girl. Hugs to you Leslie, Devon, Avery, and Birke on this sad day.

Born December 30th, 2005, got her angel wings on March 23rd, 2009

Read her story here

My Plea to You (this is very important to me)

2010-03-21T02:38:00.000-07:00

If you know me, closely or even at a distance, I could use your help.
I am asking that anyone who is willing would write a letter on my behalf. A character reference letter. A letter that describes what kind of a person you know me (or James) to be. What kind of a mother you think I am. Whether you believe I act in Hayden's best interests. Anything you write about would be ok. If you dont know me as a mother, but know me in another setting, that would be ok too. I would appreciate anything that describes who I am and the person I try to be. This letter does not have to be long. Even just a few sentances that show your support would be great. I would like to have these letters on hand so that maybe they can work in my defense when it comes to the investigation. You could mail them to me at the following address:

Angelique Vines
10805 NE 112th Place
Vancouver, WA 98662

This is really important to me, and I truely would appreciate your time in writing this letter for me.
...

I"ve been reported to Child Protective Services

2010-03-19T17:48:00.000-07:00

I JUST CANT WIN. No matter what I do, we lose. I could have just let things keep going the way they are... Hayden really doesnt know the difference anyway does he? He knows he gets cuddled all the time, he knows he's loved, he sleeps alot among soft fuzzy blankets or cuddled up against me in bed. To him, that is the way life is. Not the best life for him, but by no means is it the worst life either.

I know that he would benefit from all the daily tasks I should be doing. All of the PT, OT, Speech therapies that should be happening daily. I know he would benefit from regularly scheduled activities, feedings, baths, etc. THAT IS WHY I AM ASKING FOR HELP!

How many kids out there have drug addicted parents who dont even care that their childs needs arent being met!? Those kids are just left to fend for themselves and grow up feeling like the world doesnt care. Most of those parents are never even seen in the system because they dont care enough to "turn themselves in", which is apparently what I have done in this process of asking for help.

The case manager at the DDD has now reported me to the Child Protective Services. They force me to describe how I am not meeting Hayden's needs in order to qualify for help, but then turn around and report me the the CPS in the same breath. Everything in this system is so damn backwards. Now I can offically be labeled a bad mother, all because I tried to reach out for help to become a better one.

Meeting Hayden's Needs

2010-03-17T17:59:00.000-07:00

"There's nothing we can do, Hayden's needs are being met". This is the same thing she kept saying over and over. "What un-met needs does he have?" I was talking to Hayden's case manager at the DDD. She wanted to talk to me about how much money I've spent so far, so that it could be calculated into my spend down (see previous post). I told her the whole spend-down thing was rediculous, and I need a long term solution to this issue, not a month by month (impossible) answer.

Do I have to describe in gory detail how terrible of a mom I've become? Apparently I do. Does Hayden get regular baths? No. Does Hayden get his teeth brushed twice a day like his dentist says? No. Does Hayden get the physical therapy follow through (ROM, stretches, play, etc.) daily like the PT recommends? No. Does Hayden get ANY occupational therapy or speech therapy? No, I'm too tired to take him. Does Hayden get fed on a regular schedule as ordered by his dietician? No. Do I put Hayden in his stander everyday like I should? No, not even close. Do I give him daily "tummy time"? No...

I can go on and on with how I'm not able to meet all of Hayden's needs. I come home from working all night exhausted and want to sleep. Imagine how Hayden has just been sleeping all night with his dad, and now I come home and want him to keep sleeping so I can sleep. 24 hours a day of minimal interaction with him on the days I work. What kind of life is that for him? We need help. How can they not see this???? I would have to kill myself to truely try to meet all of Hayden's needs. I cant do it anymore. I feel totally burnt out both physically and psycologically.

When Hayden was first born, I did such a good job taking care of him. For the first year, he got everything he needed when he needed it. I barely slept, but had the energy to keep going going going for him. I cant do it anymore. I feel like my tank is on empty.

The best way I can figure to describe it is with having a newborn baby. New parents are always exhausted. Luckily for them, the baby grows and it is just a short term thing. Soon the baby will be on a regular schedule and everyone will get back to normal. For me, Hayden is a newborn forever. He will never grow out of it. He will always need constant attention. There is no "light at the end of the tunnel." Actually, the tunnel ends with the death of my son. So, the only thing I can wish for is help along the way...

Govornor Gregoire Wont Help

2010-03-11T13:49:00.000-08:00

Earlier this week I had received a message from Govornor Gregoire's office that they were returning my phone call and if I "still wanted to discuss" my issue to call him back. It was a very flat message. Disinterested. I called back, but couldnt reach him yesterday. He called me back again today and said that there is really nothing they can do. I need to keep working with DSHS. He said the most recent update in the system says that we have not met the Medicaid Spend Down eligibility at this time, but if we hire a nurse privately and pay for it out of pocket, Medicaid would apply after we reached our spend down limit. He seemed completely uninterested in helping us get the Medicaid Waiver. He just seemed to want to mark us off of his "to do" list and get on with his day.

My heart is beating so fast right now. I feel like I'm panicking, scared. I had desperatly hoped that this was going to work out, but now I'm afraid it's not going to. Why is this so hard? Why do I have to fight so hard to get nowhere? I just feel like curling up in a ball crying, or kicking holes in the wall screaming in frustration.

They have figured our Medicaid spend down to be $12,000 out of pocket every six months. After we pay that much, they will kick in to pay the rest of the medical expenses. Once the six months is over, the $12,000 out of pocket resets again. Basically that is like $2,000 a month I would have to pay. That is just crazy. It is my mortgage payment. There is no way we could do that.

I hope that the other Legisators I've talked to dont come back with this same response/solution. I am beside myself in disappointment right now.

Red Balloon

2010-03-05T08:52:00.000-08:00

Hayden's vision teacher brought over a red balloon yesterday. I have been wanting to see how Hayden responds to a red balloon for a long time now. My friend's daughter Jordan was very much like Hayden and she loved her red balloons. Leslie always made sure Jordan had a red balloon with her everyday.

I think that Hayden likes the red balloon also! He really did seem to look at it. The great thing is that the shiny mylar balloon moves and sways with the airflow in the house and causes a reflection in the sunlight. Anyways, we wanted to say hello to Jordan and share this balloon with her too, so we wrote her name on it. Maybe she was here with her angel wings helping Hayden enjoy one of her favorite things.

He's trying to talk... Happy with his new toy!

Look closely, his eyes are on the balloon!

Remembering Jordan

I Made Follow-Up Phone Calls

2010-03-01T16:27:00.000-08:00

I took the advice of Darla Helt and called the offices of those who I sent my letter to to follow up over the phone. I called Govornor Gregoire's office, Senator Cantwell's office, Congressman Baird's office as well as Paul Dubois who is a caseworker for the Congressman, Insurance Commissioner Kreidler's office, Representative Wallace's office, and Senator Benton's office.

I told them my name and a brief summary of our situation, asked if they had received my letter, and when I might expect a response. Everyone I talked to was very kind, listened while I talked, took down my information, and said they would look for my letter and get back to me with a response.

It feels so good to be "doing something." It was really hard to actually reach out for help, It took me a long time to do it. Now that I have, I feel so much better about things. I feel like people care. Hayden needs for people to care. Hayden needs for people to stand up for him. All by myself, I dont have much of a voice, but together with our State Representatives our voices could echo. I hope Hayden get's the help he needs from all this!

Family Blessings!

2010-03-01T07:24:00.000-08:00

I had my cousin's baby shower to go to in Aberdeen this weekend. I hadn't been to Aberdeen in almost a year to visit, so it was overdue! It was wonderful to see all my family again. I was SO HAPPY with how wonderful everyone was with Hayden!!! We were at the shower for over 5 hours and Hayden never got layed down once (exept for diaper changes)!!! Even though he is so big, everyone still wanted to hold and cuddle him. It made me feel so good! I love you all so much. Here are a few pictures... I didn't get a picture of him with everyone who held him, but several of you! Hugs!

Hayden & My Uncle Don

Hayden & My Aunt Patti

Hayden & My Cousin Tim

Hayden with Uncle Shane

Hayden with Aunt Tammie

Hayden & My Aunt Barb

Cousins!!!

2010-03-01T07:12:00.000-08:00

Anthony, Hayden, & Caleb

Jalyn, Hayden, & Makayla

Angelina, Hayden, & Mason

A Drawing for Hayden from Makayla

"I Love you hadin"

Too Cute!!!

Another Letter from Patty Murray

2010-02-27T07:30:00.000-08:00

I received this letter in the mail yesterday...

Dear Ms. Vines,

Thank you for contacting my office regarding the difficulties you have experienced with receiving in-home nursing care for your son. I am happy to look into this matter for you and Hayden.

My office has contacted a congressional liaison in DSHS and we've made an inquiry on your behalf. We will contact you again as soon as we have any information to report.

In the meantime, if you have any additional questions or concerns please do not hesitate to contact David Hodges in my Southwest Washington District office.

I hope all is well in Vancouver.

Sincerely,

Patty Murray
United States Senator

Bouncin' Bouncin' Bouncin!

2010-02-26T09:11:00.000-08:00

Hayden really seems to enjoy bouncing. These pictures are from a month or so ago, but we bounced with Hayden on Wednesday and he was really responding to it, trying to use his voice, little smirk on his face.

Hayden and Ryan (Physical Therapist)

Arm Sling-a-ma-jig

2010-02-26T09:05:00.000-08:00

Ryan, Haydens physical therapist created this "swing arm" type device that basically takes gravity away so that Hayden could potentially move his arm to "play" bowling with us. We got him all stood up in his stander... got him all strapped up with arm in the sling...

Hayden is wondering... What the heck??

I dont know what this face means, but it's cute!

Waiting...

Still waiting... He didnt quite figure out this arm moving business yet...

Keeping Hope Alive

2010-02-26T08:34:00.000-08:00

I got a call from Senator Murray's office yesterday. They left me a message saying that they received my letter and signature of consent and had called the DSHS and asked them to look into Hayden's case again. He said that when he hears anything back he will get back to me with an update. He also said that the Senator was planning to send out a letter as well.

I feel so reassured by this positive response!

I also got an email from Hayden's PT Ryan regarding a conversation he had with Darla Helt. She is the Parent Coalition Representative for Clark County. Her job is to help parents and guardians learn to become better advocates for their family members with developmental disabilities here in Clark County. I have talked to her on a couple of occasions in the past regarding my situation with Hayden. Apparently she has received "many calls" from multiple Legislators asking whether there was anything she could do to help us out. She told them that she had already spoken with me in the past and that we've already tried the usual routes to get support for Hayden without success.

Hopefully with additional advocacy from the Legislators on Hayden's behalf we will have better luck finding the support we need to get Hayden nursing care. My fingers are crossed.

I am so thankful that not only did these Legislators actually read my letter, but they have spent time and energy looking into things on his behalf. Thank you Representative Probst and Senator Murray (and the other Legislators who are unknown to me) who have given me some hope!

The Pink Glove Dance-- Breast Cancer Awareness

2010-02-22T23:44:00.000-08:00

I just LOVE this video!! Make sure your volume is turned up so that you can hear the music. It is a breast cancer awareness project that was video recorded at Providence St. Vincent's Hospital in Portland, OR. I have replayed it over and over again for myself and I just thought I'd share it here.

"Diaper Cake Crafts"

2010-02-22T11:11:00.000-08:00

I started a new (separate) blog called "Diaper Cake Crafts". I will continue to post all of the photos of my newest diaper cakes on this other blog. Please go check it out and "follow" this other blog as well! I am really enjoying having a little hobby now. I hope you enjoy it with me! = )

(Click on the link below to check it out!)

http://diapercakecrafts.blogspot.com/

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Diaper Cakes

2010-02-15T21:20:00.000-08:00

I found the most wonderful idea for diaper cakes on the internet. It so happens that I have my cousin's baby shower to go to this weekend, and I decided to give it a shot and create one. I think it turned out adorable! The cake is made up from disposable diapers which are all clean and usable when it is taken apart. I thought it would be a nice touch for the baby shower. I also created the mommy and baby giraffes from diapers, baby socks, bibs, baby washcloths, ribbons, and hair barettes. Everything is reusable except 3 of the diapers. I'm so pleased with myself! =). I am planning to throw my friend Jonna a baby shower and I want to make some of these little giraffes for hers as well as a monkey, a choo choo train, a rocking horse, and some other fun things. All made out of diapers and other baby essentials. Fun Fun Fun!!! = ) (James thinks I am a TOTAL dork, but I am loving this!)

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Update: 2/16/10, This is the one I made tonight, I will save it for Jonna's baby shower. It is a little choo choo train carrying some little baby essentials. I am having so much fun with these!

Senator Patty Murray Responds

2010-02-07T11:42:00.000-08:00

United States Senator Patty Murray has now responded to my letter. I received a letter in the mail yesterday along with a Release of Information form for me to fill out and return to her office. I have already filled it out and it is ready to be mailed in the morning.

Dear Ms. Vines,

Thank you for contacting my Southwest Washington office concerning the difficulties you are experiencing.

However, before my office can look into this matter, you must complete and return the enclosed privacy release form. The Privacy Act of 1974 requires that I obtain your written consent prior to placing an inquiry on your behalf.

If you have any questions or concerns about the process, please do not hesitate to contact my Southwest Washington office.

I hope all is well in Vancouver.

Sincerely,

Patty Murray
United States Senator

Email Update From Rep. Probst's Office

2010-01-29T17:52:00.000-08:00

I recieved this email this afternoon. I am so glad that Rep. Probst and Mr. Sparks are continuing to follow up on Hayden's case. I haven't recieved any more responses from the other recipients of my letter yet.

Hi Angelique,

Rep. Probst received your letter a couple of weeks ago about receiving help for your son Hayden. He had asked me to work with DSHS to try to find a solution for you, and I wanted to let you know that I just got off the phone with a caseworker at DSHS who is working on your case.

They do have a couple of different people working on this for you, and they have been working really hard to try to figure this out. They were unable to give me much information because you haven’t signed a Release of Disclosure form that would allow them to give me further details. But, they are exploring every possible option and are continuing to do so.

I will keep you updated as I learn new information. You can reach me at the email address and phone number listed below. Thank you,

Steven Sparks
Legislative Aide
Rep. Tim Probst, 17th District
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Another Letter Response (Rep. Tim Probst)

2010-01-18T13:30:00.000-08:00

Well, I have received a second response from my letter (fingers crossed!!!). This time from Representative Tim Probst. I've included the email message I received this morning:

Hi Angelique,

Representative Probst received your letter last week and asked me to follow up with you to make sure we do anything we can to help. I will try to have one of our caseworkers try to find a solution for you through DSHS. I will let you know what I hear back as soon as I can.

Thank you,

Steven Sparks
Legislative Aide
Rep. Tim Probst, 17th District

Rep. Tim Probst

I am hoping to continue to get more responses from the other copies of the letter I sent. I think now I am encouraged to see that my letters have been received and will be even more disappointed in those officials who choose not to respond. Keep your fingers crossed with me!! Thanks everyone!

Hayden is Sick

2010-01-15T20:02:00.001-08:00

Hayden has come down with his first illness of the season. He was up all night last night and all day today with a constant hoarse cough and fever. We took him to the pediatrician today and he has some sort of bronchitis. They started him on amoxicillin twice a day for 10 days. Poor little guy. I took the night off work tonight so I can snuggle with my little guy and hope that he starts feeling better soon.

I have had one response so far from the letter I wrote and sent out to my representatives. The Director of the DDD contacted Hayden's caseworker after receiving my letter and is having him look into our case again. Keep your fingers crossed that things will finally work out. I'm not sure if the other letters I sent have even reached their destinations yet because of the round-about way mail is inspected before being delivered to the congress members.

Thank you everyone who has sent me comments and messages about my letter. I am encouraged by the response I got from all of you. I hope it gets a similar response from those I sent it to...

My Letter to My Representatives (mailed 1/7/10)

2010-01-07T16:02:00.000-08:00

Dear Representative***,

Please listen with your heart as I advocate for my son in this letter.

I am a college-educated, tax-paying, law-abiding citizen. I am a full-time employed registered nurse and own a home in Vancouver, WA. I don't use or abuse drugs or alcohol. I use energy efficient appliances and light bulbs, buy cage free eggs, and don't leave the water running when I brush my teeth. I'm an average working class member of our society.

I am a mother. As surely as I write this letter today, I have no doubt I will live to bury my son. I have no dreamy aspirations of high school diplomas, weddings, or grand children in his future. Rather, I have concerns with how my child will best be provided with quality of life during the time that he is with us.

Hayden is 2 years old. He can not move (quadriplegic cerebral palsy). He can not see (cortical blindness). He can not eat or drink (severe dysphagia, 100% g-tube fed). He can not speak or communicate his needs (profound mental retardation). He suffers from up to or more then 100 seizures a day. Even breathing doesn't come easy for him, especially when he's sick. He is absolutely and utterly helpless. As his mother, I feel helpless too.

Billions of dollars are spent on the health care needs and services of those who all too often contributed to or created their own illnesses. My son played no part in the miserable state of his health. Yet he can not receive the in-home nursing services that would greatly impact his health and quality of life. Why? Because of the way I (as his mother and guardian) have lived my life as described in the first paragraph of this letter.

Ultimately, my being a responsible, contributing member of society is the factor that prevents him from receiving the services he needs. He doesn't qualify for Medicaid (which could provide Hayden nursing services) because I earn "too much" money. My private insurance doesn't cover in-home nursing care. I cant afford to pay privately for a nurse (who makes the same wage that I do), to come and care for him while I work and then still pay the mortgage.

There is something wrong with the system when the only answer seems to be to step backwards. If I were to give up my job and become unemployed and give up my home, I could become another burden on society, but my son would then receive the services he needs. My other option is to give him up altogether to live in a state-funded institution where he can be provided with 24 hour care. Neither of those options would benefit myself, him, or the taxpaying community in general.

We have tried to get him on the Medicaid HCBS Waiver to enable us to keep him at home and got nowhere. Please help us find a way to get him the in-home services he needs, while he still has time to benefit from them.

Sincerely,
Angelique Vines

***I mailed this letter to the following people:
(along with some pictures of Hayden)

01. President Barack Obama
02. First Lady Michelle Obama
03. Vice President Joe Biden
04. U. S. Senator Maria Cantwell
05. U. S. Senator Patty Murray
06. U. S. Representative Brian Baird
07. U. S. Representative Cathy McMorris Rodgers
08. WA State Govornor Christine Gregoire
09. WA State Senator Don Benton
10. WA State Representative Tim Probst
11. WA State Representative Deb Wallace
12. WA State Insurance Commissioner Mike Kreidler
13. Director Linda Wolfe, Division of Developmental Disabilites
...

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Hayden's 2 Year Pictures

2009-12-29T15:40:00.000-08:00

Well, Hayden turned two, so we had to have his official 2-year-old pictures taken. He was a little turd that day and wasn't cooperating very well (he just wanted to sleep, I could hardly get him to open his eyes for anything!) My friend (and photographer) Missy did a great job catching the few moments he did give us. I love this first one of Hayden and I, he's such a little cutie pie. He is getting sooooo darn big!!!! My little baby boy is growing up bigger and bigger and bigger and bigger...

Take 5 Photography

Christmas Morning

2009-12-26T17:55:00.000-08:00

We hope everyone had a wonderful Christmas! We had a great day! I got off work at 7am and after I got home I had some Starbucks Christmas blend coffee while James cooked biscuits and gravy, hashbrowns and eggs... it was a delicious breakfast! Then we opened gifts and made a great mess of the house =). I took a nap while everyone watched a movie and then I woke up to the prime rib cooking and James making twice baked potatos! What a wonderful day! Santa brought Hayden a portable dvd player with some Baby Einstein videos, a foam mattress topper, several new blankets, a pillow, an interactive chimpanzee, books, clothes, and a stuffed animal...

Hayden's new ornament this year... a teddy bear with heart shaped balloons

James' ornament... another fishing Santa!

This was Hayden's ornament from last year

It's way too easy to find fishing ornaments! lol...

I just love this one...

Make-Shift Bowling Fun!

2009-12-15T08:27:00.000-08:00

With bowling being such a big part of Hayden's life (since James and I bowl on a bowling league) Ryan thought that it would be fun to get Hayden bowling himself. We have been balancing his big green ball on the stander, a ladder, and a kitchen stool and then creating a lane out of crinkle paper and a pin out of his best little teddy bear friend. Then we help him bump the ball down and he usually gets a strike! = )

Pictures with Santa

2009-12-15T08:20:00.000-08:00

I took Hayden to sit on Santa's lap and have his picture taken yesterday. He is just so darn cute! He was completely and totally asleep and there was no waking him up, but he looks just as sweet as ever! Merry Christmas my little Buh-buh...

This is Hayden's 2008 picture with Santa, boy he's grown alot over the last year!

Our Christmas Tree(s)

2009-12-15T08:13:00.000-08:00

Everybody who knows me knows I LOVE Chritmas ornaments!!! Every year I cant wait to put my tree up so that I can put up all my ornaments (and buy new ones!). This year we decided that Hayden gets his own little treee with his own little ornaments. It works out perfectly because it sits right in his direct line of vision. Merry Christmas Everyone!

I Had To Call The Police

2009-11-05T15:21:00.000-08:00

Wow. I am beside myself with disbelief.

Someone has been stealing pills out of Hayden's medication bottles (his seizure medications). We've been running short on his phenobarbital (a narcotic/barbiturate) for the last few months. At first I thought that it might be because we had given too many "extra" doses and that caused us to run out early. Then after talking to James, we realized that that wasn't the case. Then I thought that maybe the pharmacy was shorting me pills, so the next time I had them filled I counted them when I got home, 120 pills, more then enough to last a month (we use 105, the other 15 are extra if needed). Then this month we ran out 5 days early again (like 30 pills missing). I also believe that his Tranxene (which is a Valium type drug) has been being stolen as well although we haven't run out of those ones.

I went to the pharmacy to try to get more phenobarbital because we were out and Hayden NEEDS that medication. They said that they had "given me more then enough to last the month and I shouldn't be out already" (it was early to fill it). Phenobarbital and Tranxene are both controlled substances. The pharmacist wasn't going to give me anymore without the doctor's order, but the doctors office was closed. I had a fit (panicked) because he cant go without it. I felt as if I was being accused of abusing/using/doing something wrong with Hayden's medications. They finally gave me a few pills to get him through the night and morning until the doctor could send the new prescription.

Once I got home I was feeling really upset. I thought they suspected I was doing something illegal with Hayden's meds. I was afraid they might accuse me or report me, or that it could turn into a big thing with custody of Hayden, my nursing license etc.

I decided to call the police and report it myself. A police officer came to our house yesterday and I explained everything that had happened and how we finally came to the conclusion that someone was stealing the pills because there is no other explanation. We told him that we don't know who it is but it has to be somebody that comes over to our house. It is hard to believe that anybody we know would come to our house and steal his NEEDED medications. It never even occurred to me as a possibility before this. I had complete and absolute trust in our family and friends. I told the officer that we were going to buy a lock box to keep his medications in from now on, and that I would be keeping closer tabs on the number of pills in his bottles. He took the report and filed it and said if we find out who it was, or it keeps happening to call him again.

I'm still in shock. I cant believe that this is happening. Who would do that to us and to Hayden?

Unbelievable....

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Big Pin Pin Birthday!

2009-11-03T22:12:00.000-08:00

Today Hayden OFFICIALLY turned two!

James and I have been on a bowling league since before Hayden was ever born. He's been a regular at the bowling alley on Tuesday nights ever since he was conceived. Most of the league members know who Hayden is and many of them come over to see him and say hello every week. When we got to the bowling alley tonight, some of the ladies on the league surprised us with cake, balloons, and a gift for Hayden (I didn't realize they were going to do that, so I also brought a cake!). They even gave Hayden a birthday card that most everybody had signed. It was so nice! It is so nice to have kind hearted, loving, wonderful people in our lives!

The name of our bowling team is Big Pin Pin (get it? lol), so they had a shirt made for Hayden that says "Big Pin Pin Supporter". What a sweet and thoughtful fun gift! I cant wait for next week so he can wear it to bowling! He's like our team's good luck charm = )

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Hayden's 2nd Birthday Party

2009-11-01T21:22:00.000-08:00

Hayden's birthday present: A lazyboy-style recliner!!

The snake cupcake cake in the shape of the number 2...

The cutest little bear that Sally and Jamal got for Hayden!

Of course... Susanna and James had to smear frosting on him!!!

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Tuesday is Hayden's Birthday

2009-10-28T16:08:00.001-07:00

Well... Next Tuesday (Nov. 3rd) Hayden will be 2!! I can hardly believe it. He's getting so big. Almost too big. I think I need him to stop growing now or I dont know how I'm going to move him and carry him anymore! I ordered him a child size recliner (lazyboy-style) and a special "tv tray" to go with it for his birthday. It arrived yesterday. I think it will be a perfect comfy seating option for him downstairs, and the tv tray will provide a place that I can put toys on for him to feel. I will post pictures later...

We are just having a dinner (probably bbq hamburgers and hotdogs) and cake get together for his birthday on this Sunday, Nov 1st. if anyone wants to come....

Denied Services

2009-10-20T15:12:00.000-07:00

Well. This totally sucks. I talked to Hayden's caseworker at the DDD today and he told me that after all this time of trying they couldn't make it happen. Hayden will not get any further nursing/respite services. He said that it went all the way to the top of the DDD (Department of Developmental Disabilities) who actually did approve it, however the co-payers of this care the DCFS (Department of Children and Family Services) did not aprove it so it cant happen. There apparently isn't any other funding options, so at this point, it's over. His case worker told me he will continue to keep a lookout for other options. I'm guessing the only respite option I have left is the inpatient respite services where they would take Hayden for a couple of weeks to care for him. Why does everything and every decision have to be so hard?

Box Tops For Education

2009-10-15T08:23:00.000-07:00

Hey Everyone,

I've decided to start collecting Box Tops For Education to benefit the Washington State School for the Blind. Hayden receives services from this school and I want to support them. If anyone out there has never thought of saving these box tops I am asking if you would take the few seconds to rip them off and save them. Each one is worth 10 cents so they can really add up when a lot of people are collecting them. Each school is allowed to cash in up to $20,000 per year in box tops! What a wonderful way to donate to a special cause without spending any extra money. Everytime you throw these away you're throwing a dime in the garbage! So if you could just rip them off and throw them in a baggie or in a drawer to save them and then send them to me when you have the time that would be absolutely WONDERFUL! = )

You can find these box tops on all kinds of products for example: Kleenex, Cottonelle, Scott, Viva, Huggies, Good Nights, Pull ups, Betty Crocker, Bisquick, Fiber One, Gold Medal, Nestle Juicy Juice, Heafty, Green Giant, Pillsbury, Totino's Pizza Rolls, Hamburger Helper, Chicken Helper, Tuna Helper, Old El Paso, Suddenly Salad, Yoplait, Avery office supplies, Hi-Lighter markers, Marks-A-Lot markers, Cascadian Farms, Fruit Roll Ups, Fruit Snacks, Nature Valley, and of course LOTS and LOTS of different cereal boxes!

]

Thank you for your support! Message me if you need my address!

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Hayden's Little Friend

2009-09-24T15:36:00.000-07:00

We had my dog Parker here this last week for a visit and he and Hayden got along quite well. Parker is getting old and likes to sleep alot so Hayden was the perfect person to snuggle up to. Hayden seemed to respond to Parker too. It was so cute to see them together = ) ***

(*** About a week after these pictures were taken, poor little Parker passed away of a heart condition. I'm so thankful that Hayden had the chance to find some joy in the little dog I have loved for the last 12 years!)

Engagement Ring

2009-09-06T05:41:00.000-07:00

I finally got my engagement ring yesterday and it's beautiful. I feel so lucky. I cant wait to get married! This time next year I will be Angelique Reagan! Wow!

Petition to the President and Congress

2009-09-02T12:47:00.000-07:00

NOEWAIT'S PETITION TO THE PRESIDENT AND MEMBERS OF CONGRESS

The National Organization to End the Waitlist (NOEWAIT) has a petition directed to the President and Members of Congress to eliminate waitlists for individuals with developmental disabilities and to allow for the continuation/portability of services across state lines.

1. PLEASE GO TO THIS WEB SITE AND SIGN THE PETITION

http://www.gopetition.com/petitions/noewait.html

Circulate this in any way you can!

(As you know, Hayden is on the waitlist for the medicaid waiver and to receive other services including continued respite care. Please got to this site read the petition and sign your name to it. I have already signed. Maybe if there are enough signatures we can help make change happen)

Mommy, Me, and her new Glasses!

2009-09-01T08:44:00.000-07:00

Well, I got my eyes checked for the first time since I was probably in grade school. All of you who know me, know that I don't hear that well. I always need to have the closed captioning on when I watch tv or else I'm lost! It was getting to the point that I couldn't even see well enough to read them anymore so tv was hard for me to watch. I see fine close up, but things are blurry at a distance. Anyways, I guess I have 20/125 in my left eye and 20/60 vision in my right eye. I suppose it's not totally terrible but boy what a difference glasses make! I am seeing the world clearly for the first time in a long time! I just have to get used to how they look and feel on me.

Treena's Last Day =(

2009-09-01T00:21:00.000-07:00

Well Monday was Treena's last day of caring for Hayden. Our 8 weeks of respite care is now over and we are sure going to miss her! Hayden is going to miss having all that one on one attention that she was able to give him. His growth and development improved so much during the time she was here with us. She was a blessing! I hope that the DDD or DSHS can somehow find a way to continue/resume the funding of the respite care in the future. We are keeping our fingers crossed...

Family BBQ

2009-08-31T08:28:00.000-07:00

We went to grandma's house this weekend for a family BBQ. Hayden had a good day. He loves being around other kids and they seemed to enjoy playing with him. He's like their little doll. He seems to smile more when other kids are around. They hold his hands, talk to him, kick his little feet for him, and give him kisses. Sweet girls. My handsome little boy sure does love their attention!

First Visit to the Zoo!

2009-08-19T16:19:00.001-07:00

Hayden's first trip to the zoo was a hot day, but we stayed in the shade as much as possible. Luckily the zoo has lots of cool and shady places. We lathered the kids up in 60 spf and spent the whole day there. Hayden had a wonderful day. Seizures weren't too bad and he was awake and smiling throughout the day. What a wonderful experience. Plus he had his first train ride too!

This fish is almost as big as him!

Lots of big fishies (kinda remind me of our fish pac-man)

Makayla, Christina, and Jalyn

Hayden and Me

The girls in a little cave

She's too darn cute!

Hayden and mommy in front of the giraffe

Makayla holding and feeding a lorikeet

Jalyn feeding the lorikeet. They were so excited about this!

Hayden's first train ride, we went around the zoo, to the park, and back.

Bubble Bath Time!!

2009-08-19T01:21:00.000-07:00

My sister and my nieces came down for a visit this weekend and their favorite thing to do was to have a bubble bath in the jacuzzi tub. So, after they played for a bit, I decided to strip Hayden down and put him in with the girls for a minute. This was Hayden's first bubble bath = )

Makayla has her hand by Hayden's head so he stays above the bubbles = )

A Few Photos

2009-08-12T12:05:00.000-07:00

Here are a few recent photos we've taken. These are at the park on on of our hot days earlier this month...

Hayden with his shades on his head...

Hayden was so smiley this day! It was so fun to talk to him and see him smile!

Respite is going great!

2009-07-17T15:19:00.000-07:00

We are finishing up our 3rd week (out of 8 weeks) of respite care for Hayden. It has been wonderful. I feel a lot more rested and less stress. Hayden's caregiver, Treena, has been so good with him. She is very caring and attentive to Hayden. She does stretches with him everyday, range-of-motion with his arms and legs, tummy-time, helps him to play with little toys, gives him time to look at his animal lamp light box, plays music, takes him for walks out in the neighborhood, turns and repositions him constantly, talks to him, and is great at handing his seizures. What a blessing!

Tortured Feet (my poor baby)

2009-07-17T08:20:00.000-07:00

Well, as happy as I was to finally get the stander for Hayden, it turns out that I dont like it very much. I dont feel like it fits Hayden very well and I dont think it provides him with the right support and positioning he needs to stand. I have requested to return it or exchange it for a different one. So Ryan (Hayden's physical therapist) brought over an old model stander to try out and see if it might work better in the meantime. It looks like a torture device, but it actually supported Hayden pretty well. We put Hayden's orthotics on his feet before putting him in the stander to give his feet and ankles some support. I knew they were getting small for him, but I didn't realize how small they actually were. He had them on for less then an hour and his poor little feet were really red and painful looking (when looking at the pictures below, the welts on his legs are actually from the orthotics, he didn't have any socks on). He never even gave us any indication that these might be hurting him! My poor baby. I guess it was a torture device after all! After they had been off about 20-30 minutes his feet went back to normal color and seemed ok. He definately wont be wearing those again!! We made an appointment to have some new ones made. He will have casts made next week.

New Stroller!

2009-07-10T07:46:00.000-07:00

Hayden's physical therapist, Ryan, brought a special needs stroller over yesterday for Hayden. It was given by a family of another special needs boy who rarely ever used it and wanted it to go to someone who needed it. It fits Hayden perfectly. I am so excited! When he sits in it he is able to sit straight up and all the padding and supports keep him in good alignment. What a wonderful surprise!

Our Trip to Newport, OR

2009-07-08T15:00:00.000-07:00

The Oregon Coast Aquarium

Sitting in the car all wrapped up, waiting for the fireworks to start!

I spent an hour writing our names in the sand with 5-6 foot letters. Then when I went back up to the room to take pictures, it was too foggy to get a good one!

James and Hayden are standing in front of this Huge Plane at the air Museum in Tillamook, OR

Swimming In Newport

2009-07-08T14:47:00.000-07:00

Hayden had his first large swimming pool experience this last weekend. The three of us went to Newport, OR for the 4th of July weekend. We took Hayden down to the Hotel pool a couple of times. The water wasn't too bad, but Hayden had shivers and goose bumps the whole time anyways. It was amazing how his little body just floated. Of course, his head is so heavy it would sink in a second, but just holding onto his neck to keep his head above water was all it took to hold him up. The rest of him just floated. After "swimming" in the pool for a little bit, we all got into the hot tub so we could get all warmed up before heading back up to our hotel room.

Respite Care Approved!

2009-06-29T18:40:00.000-07:00

Everything with the respite care for Hayden has finally gone through and we will be starting it this week. The DDD and the DCFS will be sharing the cost of giving us a care provider for Hayden for 30 hours a week for the next 8 weeks. It will be so nice to have someone to help with Hayden's everyday care, and also, it will be great for Hayden to have someone else to interact with him. The nurse delegater and caregiver came over today for a few hours to meet Hayden and learn the things that need to be done to help me take care of him. The lady that will be taking care of Hayden seems really nice and caring. This is going to be such a great thing for Hayden. I am so thankful that they were able to work this out. What a relief to me. Maybe I can give my brain (and body) a rest for awhile and just relax a bit and maybe get some sleep!!!

Constipation

2009-06-29T00:58:00.000-07:00

Ohhhh, my poor poor poor little baby boy.
*** Warning, dont read if you get grossed out easily***
We ran out of miralax (laxative), which I usually give him everyday to help keep him regular. We were out for a few days before I got more and poor Hayden sure paid the price for it. He was so impacted with stool. He hadn't pooped in days and days even though we'd given him extra miralax after I got the new bottle. I gave him a glycerine suppository and held his legs up against his belly trying to help him go. His little poop was so hard he couldnt get it out. His little anus was stretched out so wide with the poop stuck there. I tried the best I could to get it out, but I could only get a little bit. I quickly ran a warm bath and layed him in it and used Q tips trying to "dig" it out. He was crying and obviously hurting and distressed. I really almost started crying too, I could feel his pain. I thought he was going to rip his little bottom open. He did bleed a little bit. Finally we got that little bit of stool to pass and he calmed down. It was SO HARD! I can still feel hard spots on his belly, where I think there is still stool stuck further up in his bowels. I ran to Walgreens and bought some child's enemas, more suppositories, and mineral oil. I gave him an enema, but didnt get anymore stool to come out. I am afraid he could get a bowel obstruction. I think I will just feed him water overnight (no formula) and call his doctor in the morning. Ugh. I just feel so horrible.

Insurance Benefits

2009-06-20T08:30:00.000-07:00

Wow. I am amazed. Could insurance people have hearts? I would almost believe they do after the good news we got. Hayden's wonderful physical therapist, Ryan, wrote a very persuasive well written request to my benefits department at work advocating for a better therapy benefit for Hayden. He emphasized how inadequate the current benefit was for a child like Hayden with a long term neurodevelopmental need for therapy. He described how much progress Hayden has already made and how much progress he believes Hayden will make in the future with consistent weekly speech, occupational, and physical therapies.

A representative from the benefits department called Ryan after receiving his letter and told him they were touched by what he wrote and the letter had been forwarded to the Medical Director for consideration.

Well, we were notified that they made a decision and they did in fact (tentatively) increase Hayden's therapy benefit to allow for weekly visits for all three therapies! This increased benefit is for the next 3 months and then they will re-evaluate at that time. Ryan provided them with Hayden's current abilities and activities, and then at the end of the three months, he will update them on Hayden's progress.

Hayden has an angel looking out for him I think. When he really needs something, it somehow seems to happen. I feel so blessed!

Respite Care

2009-06-20T08:12:00.001-07:00

After talking with Hayden's caseworker at the DDD again, I found out that Hayden is in the database (waiting list) for the waiver. However, it sounds like being on the database is about as good as not getting it at all. There are so many people waiting and fewer and fewer positions funded and rarely available.

As far as the respite care, the DDD caseworker came by on Monday with a social worker from the Department of Children and Family Services (DCFS) to evaluate again our need for respite care. From what I understand they are trying to work it out so that the two departments will split the cost of our respite care. I appreciate that they are working together to try to make this happen. His caseworker said that they were working on final approval for these services and possibly starting them in a couple weeks.

Representatives of the agency who will be providing the respite services came by and met Hayden and I. We talked about the things they could do to help with Hayden's care. I'm not sure yet how many hours a week we will be approved for, but any amount of time will be so helpful. My fingers are crossed that this works out for us!

Motherhood is a Blessing!

2009-06-09T23:21:00.000-07:00

As I sat tonight and watched Hayden falling asleep I felt overwhelmed by the pure happiness I feel having him as my son. I feel so blessed to have him in my life. I feel so thankful to God for giving him to me. He looks so peaceful laying there. My heart is screaming with love for him and I wish I could kiss and hug that love deep into his soul so that he knows how important he is to me. I will admit there was a time that I felt like God was trying to punish me by giving me this very sick child. Now I know I couldn't have been more wrong. God was blessing me that day. Of course I am sad that Hayden has so many struggles, but when I look at him, I see that this is what makes him who he is, and I love everything about him. Today I just feel so greatful.

Medicaid Waiver Update

2009-06-05T14:26:00.000-07:00

I spoke with Hayden's caseworker at the Department of Developmental Disabilities (DDD) yesterday. He told me that Hayden did not get the waiver. I asked him to send me copies of the assessments in the mail. He told me that he is still working on trying to get me some respite care for him. We will have to wait and see if that pans out or not. So disappointing. It seems so strange to me since Hayden fits perfectly into what their definition of eligibility for it is. For example, acceptable diagnostic criteria for the waiver in Washington state are Mental Retardation, Cerebral Palsy, Epilepsy, or Autism. Hayden has 3 out of 4 of these!!! It only takes one to qualify. This is just so crazy to me. I know the waivers are very limited and everyone who qualifies cant receive one (funding is so limited). They get to choose who does and who doesnt based on greater risk/need. I guess their assessment of Hayden didnt put him at high enough risk. He would have to be at more immediate risk of being put in an institution to get him qualified I think. Maybe I need to say that I want to place him in one. How totally wrong and heartbreaking is that?

Stander and Carseat

2009-06-05T08:31:00.000-07:00

Yay! Hayden finally got his stander yesterday! The guy from CARE medical came over and set it up and adjusted all the settings to fit him the best. He looked so cute standing up. He was so sleepy though. I hope he will enjoy standing, and become better at it over time. We also got his carseat this week. Wow. It is big and heavy! He looks so tiny in it. It definately gives him lots of room to grow. It can be used for a child anywhere from 22 pounds up to 105 pounds!

Giant Therapy Ball

2009-05-31T22:14:00.000-07:00

Hayden really seems to like his therapy ball. Ryan, his physical therapist got it for him and taught us how to roll him around on it. It really seems to get his attention. Sometimes we hold him and sit on it and bounce. Sometimes we lay him on it and bounce him. Sometimes we hold onto his hips and roll him upside down. He seems to like all of it. Yay! Hayden's learning to play!

Pool Time!

2009-05-31T20:26:00.000-07:00

Today was a beautiful day! James and I decided to go get Hayden a little swimming pool, so that he could enjoy the sun too. Afterwards, I layed him on the towel to dry off, then on the grass. I think he was really interested in the way the grass felt on his bare skin. He kicked his feet and moved his arms a few times. Here are a few pictures = )

Hayden Kicking

2009-05-21T15:44:00.000-07:00

Today Hayden had an AMAZING day!! Hayden had his physical therapist, his teacher, and his vision therapist all here. He had a really fun time being rolled around on his big green ball with Ryan (his PT). Then Sarah and Cindy started playing with him with things to stimulate his senses. Cindy (his vision therapist) put a piece of silver crinkly paper under Hayden's feet and he actually moved his legs and kicked at it. It was so exciting and wonderful to see!

Playtime with Hayden

2009-05-19T07:48:00.000-07:00

Playtime with Hayden has been so fun lately. He is really starting to take in information and interact. This week I got him a big orange koosh ball and some other fun toys and he seems to like them. Usually if you put his hands on something, they will just flop back down to his sides. When I put his hand on the koosh ball, he will keep it there for a while. Maybe it's easy for him to hold onto or the rubber of it gives his hands traction so they don't fall down, but whatever the reason, I'm so excited! He seems interested by the texture and feeling of the koosh ball. I also got him some great lamps that light up and move. One is an aquarium where it look like the fish are moving and swimming. The other is of animals. Daddy also had Hayden up on his bike this week.

Smiles! = )

Lots of Toys!

Aquarium Lamp

Jungle Animals Lamp

Daddy's idea of playtime =)

Sitting on daddy's dirt bike

I think he likes it!

Hayden and Mommy

Hayden and daddy, playing on the computer...

Equipment Approval

2009-05-19T00:14:00.000-07:00

I received a phone call on Friday from our case manager at my insurance company. To my surprise they had approved all of the pieces of equipment we applied for. The item I am most surprised about is the carseat. When I had inquired about the car seat months ago, the customer service folks at the insurance company said that they would never pay for a carseat, even if it was a special needs carseat, because that was considered a parents responsibility. The physical therapist told me to just apply for it anyways (thank goodness) and if we were denied we could seek alternate funding. Meanwhile, a friend of mine gave me the car seat her daughter used, which is the same one we got approved for. I am so gratful. It is a very large carseat and would be a hassle to transfer from my car to James' car all the time. Now we will have one for each car. Thank God for small conveniences.

The other pieces of equipment we are getting include a stander, this thing will provide Hayden with full body support so that he can "stand". It will allow him to put weight on his legs/feet and help him to keep his bones stronger. It will also provide him with another position and perspective to view the environment around him.

This is called a Versaform positioning pillow. It is filled with small styrene beads that mold to the body's shape and remain in that shape when the air is extracted from the pillow. This is neat because we can mold it to any position we want to put Hayden in. Once extract the air and it will stay in that position until we let the air back in, then we can change the shape. Custom positioning!

The medical supply company said it could take 4 to 6 weeks to get the equipment now that it has been approved. I cant wait! = )

Medicaid Waivers

2009-05-05T13:10:00.000-07:00

Hayden has a lot of medical and developmental problems. He requires a tremendous amount of intervention to give him (what I consider) "quality of life". I have decent health insurance that pays for most of Hayden's medical bills (I have been paying $3,000-$6,000 per year out of pocket and then the insurance covers all the rest). The one thing that is not covered adequately is therapy. The insurance policy is very limited on therapy visits. Hayden is allowed only 60 visits per 2 years (which could be divided up into 30 visits per year). This is not anything near the amount of therapy that he needs. There are 52 weeks per year. He needs Physical Therapy at least weekly. He also needs Occupational Therapy, Speech Therapy, and Vision Therapy. So really, he needs at least like 168 visits per 1 year (336 per 2 years)! I have called the insurance company to beg their understanding. This policy is set up to accomodate someone who is recovering from an injury/surgery and needs a temporary rehab program. Hayden has a severe long term neurodevelopmental need for these services. Needless to say, they basically said "too bad."

I tried to get Hayden on Medicaid (since therapy is not as limited on medicaid), but he would not qualify because of my income. I have also been searching for some sort of respite care services for Hayden for probably about a year now. Everyone I have talked to (social workers, public health nurses, department of disabilities, DSHS, parent advocates, doctors, therapists, caseworkers, etc.) would look into it for me, and then come back with "I'm sorry" either they couldnt find anything, or my income disqualified Hayden from the services that were found. They said that I could pay a respite provider out of pocket to care for him. No thanks. I cant afford to do that. So James and I have just managed alone with very little help. Nobody EVER mentioned to me the existence of a "Medicaid Waiver" until a friend that I met through Hayden's therapist told me about it. Her medically fragile daughter was on it, and received in-home nursing care, respite hours, therapy, equipment, etc. from being on it. With her help, my journey to learn the Medicaid system began.

This was no easy task. The state workers are very closed lipped about these programs and they dont offer you any information unless you force them to and demand it. Via the internet, I've learned a lot and am currently in the process of getting Hayden qualified. First I have to have him evaluated and determined to be impaired at the level of qualifying to live in an institution known as an "Intermediate Care Facility for the Mentally Retarded." Once this is established I can "waive" that option and choose to keep him at home. He would then be allowed on the waiting list for a Medicaid Waiver. There are limited spots available and the wait could be long, but if he were to get the waiver, they would pay for his therapy, respite care, equipment, and pay any medical bills that my insurance doesn't pay.

He had his initial assessment about a week ago. I haven't heard anything yet, but I will update when I have more information.

Hayden's Medical Summary

2009-05-05T09:37:00.000-07:00

I guess as the first blog entry I will just make it simply about Hayden's health conditions.

Hayden is now 18 months old. He was born November 3rd, 2007. He was born 5 weeks early because I had a very complicated pregnancy. He has been having seizures since the day he was born. In the beginning, Hayden was either in a drugged sleep, or awake having continuous seizures. There was not time of the day where he was awake and aware of what was going on around him. The seizures were so constant. Over the last several months, he has made great strides. He has been spending more and more time awake and alert. He is now starting to try to interact with us. He moves his lips when we talk to him, as if he wants to talk back and he breathes louder (you have to hear it to understand). He has smiled several times now. He has used his voice "eh, eh" several times now. We are so thrilled.

Hayden now has anywhere from 25-100 (sometimes more) seizures a day. He is able to hear, but his vision is impaired (we aren't sure how much he's able to see). Hayden does not make purposeful movements, although he will do full-body stretches and has started making "twitching-like" movements in his arms, which happens because I think he wants to move, but hasn't figured out how to tell his body what he wants to do. He cant hold his head up or change is position. He doesn't communicate his needs (hunger, wet diaper, discomfort, etc). He does cry with some of his seizures though.

We dont have a specific diagnosis of what is wrong with him. I am including all of his individual diagnoses/conditions in case maybe someone else might have a similar child ...

Quadriplegic Cerebral Palsy, Infantile
Intractable Epileptic Encephalopathy of Unknown Etiology
Cortical Visual Impairment (Cortical blindness-- improving)
Dysphagia with Chronic Aspiration of oral contents
100% Gastrostomy tube fed
Gastroesophageal Reflux Disorder (Resolved with Nissen Fundoplication surgery)
Obstructive Sleep Apnea (improved after adenotonsillectomy)
Psudobulbar Palsy
Extreme Hypotonia (No purposeful movements)
Failure to Thrive (poor growth and weight gain, less than 3rd percentile)
Microcephally with Ridging of Cranial Sutures. (Hayden's head measurements have not changed (grown) since he was about 6 months old)
Undescended Right testicle (Laproscopic removal of (dead) testicle from abdomen)
Brain MRI at 6 months old show a very small corpus collosum and delayed myelin suggesting a dysmyelinating syndrome.
EEG at 15 months: "severely abnormal for age due to background slowing and disorganization, multifocal epileptiform features, right frontal slowing, with seizures arising independently from the right frontal and left temporal regions. These findings suggest severe bihemispheric dysfunction with a lowered seizure threshold, and support a multifocal mechanism of onset for this patient's seizures."
Chest X-Rays show central airway thickening due to chronic aspiration.
Chromosomal microarray analysis showed a loss of copy number at chromosome 12q14.2, however, both James and I were also tested, and one of us also has this deletion, indicating it is a "family variant" and not significant (not the cause of his seizures).
All other diagnostic lab tests have come back normal/negative including: Chromosomes, FISH and methylation for PWS/Angelman, Urine organics, Plasma amino acids, Transferrin electrophoresis for CDG, VLCFA, Lactic acid, Urine sulfocysteines, MECP2, ARX, Copper serum, Ceruloplasmin.