The Price of Semi-Indepence

Hailey has pushed through this last relapse like a champ. She was unable to sit or crawl for about 3 weeks until her head stopped spinning and she regained her strength. We kept up with our appointments and her physical therapist, not ever seeing a child with leukodystrophy, was amazed at how far Hailey would push herself during PT. 

We had been discussing getting Hailey a Gait Trainer (which is like a large walker) before she had relapsed. We knew we would have to fight our insurance for it and they would come back and say that we could order it but if they denied it, it would be our bill to pay. Well, with a price tag of over $7,600.00 we knew we weren't going to be able to just pull that out of our hat. 

So what to do? We want Hailey to get what she needs, we are the parents that need to provide for her, insurance is suppose to help. When ever an insurance problem comes up I always ask myself what I pay for every month when they do nothing for me? Since Hailey is a minor and for some odd reason doesn't qualify for disability she (we) can apply for Medicaid. If we get the gait trainer and submit it to medicaid and they help us pay for it we will be good to go. Until everything gets figured out we went ahead and put the order in for her gait trainer. 

After a month when the GT arrived Hailey had already had and came out of her last episode. She was ready to get walking all alone.

At the end of August will be 1 year that Hailey hasn't been able to walk and has been wheelchair bound. The days, and months are going by fast in slow motion if that makes any sense. On one hand I can't believe it's been a year on the other, everyday is such a struggle and it seems like it takes forever for 1 day to pass. Especially when she had her episode that was the longest 3 weeks in a long time. 

Hailey was ready to get started with her walker. She did so good. Always with a smile on her face. She walked up and down the room. 

It is so important for us to be able to give Hailey the independence she wants so bad. It breaks my heart when she tries to get up and do something and then gets called back to reality that she's unable to walk anymore. But I am glad that she will keep trying. Who knows maybe one day her brain will communicate with her body and follow direction.

The other day at her school all she wanted to do was get out of her wheelchair and dance to the music the other kids where dancing to. Since I am around Hailey 98% of the time I have experienced the un-nessasary neglect some children show towards Hailey. I understand that they don't get "it." Why can't she walk? What do you say when a little kid asks that? She's sick? Well, kinda but don't worry you won't catch it. When there are kids that won't play with Hailey there are kids that don't see the wheelchair and will play with Hailey. It's hard when you see you child get left out of things that she obviously wants to be a part of. I've seen it and it hurts, but I don't let it get to me. I try to "fix" it when I can. Josh hasn't been around this part of Hailey's life. He's at work when she's at school and I attended school with Hailey for many many days seeing this happen several times. 

Over the weekend we attended a festival where there was music, food, and dancing. While I went to get food, Josh was with Hailey and she wanted so bad to get out of her chair and play with the little girls that were dancing to the music. When he takes Hailey to where the girls are the girls move. He helps Hailey go to where the girls are now, they move again. Hailey is getting upset wanting those girls to hold hands and dance with her, but they are moving from here to there and not including Hailey. Once I get my food and make it back I go to Josh and he asks me to take her and he leaves. I knew something was bothering him so I leave Hailey with my mom and go after Josh. He was so upset about what had happened. He tells me with tears that, "all she wants to do is play with them and she can't." I kind of think I should have prepped him for this. You never what to think that people are saying, "oh look, no one wants to play with the handicapped kid." There are people who do and there's nothing I can do about that. I've had people read my blog and actually tell me, "I'm so glad this isn't happening to me, I'm so lucky." I don't say what I want to say back and maybe I should. With Hailey I become her friend and I tell her I want to dance with her and I want to play with her, she won't be alone. Once I finished talking to Josh I went back in and my mom and a family friend were with Hailey and those same little girls were with and they were holding hands and dancing together. Hailey was so happy! 

So when things come up that cost thousands of dollars and you think there is no way for you to afford something that, that will help increase the quality of life for your child, you just go for it. If it works out, awesome. If it doesn't, well...that's life. If it takes us $20 a month for 32 years then that's what it'll have to be. You can't put a price on your child's smile. 

New AFOs

AFO stands for Ankle Foot Orthotic. I talked about them before in this blog. Hailey got her first pair in November of 2012. At first she HATED them. Her feet where always pointed like a ballerina and her spasms were out of control. She wore her first AFOs for 12-15 hours a day and they put her foot in a 90* angle position. (Neutral)
She grew out of those AFOs in April. Kids grow out of shoes so fast! I was pretty bummed when she grew out of these after only 6 months of use, it's was almost like paying $500 a month for shoes and now she can't use them anymore, and that's the end of that. Since they are molded strictly to her foot they can't be recycled.?
We took her to get fitted for new AFOs with the thought that she's going to start to use a gait trainer and will need shoes that will allow her to flex and contract her ankle to "walk" in the trainer. We got her AFOs then she had an episode and it set us back so we had to hold off on the gait trainer. We are still fighting working with the insurance to have that approved. It's been almost 2 months and apparently they can take up to 90 days to approve or deny.
So with these new AFOs Hailey has to get used to them once again. Starting off with 2 hours a day for 5 days then 4 hours then eventually all day. She wears them to school and as soon as she gets off that bus she says, "Take it off" and points. We have to distract her but she is very adamant about getting her way. These one provide more stretch which cause more cramps which cause spasms which cause crying.
These are also different because these ones slip into real shoes. Shoes that are 2-3 sizes bigger then her foot. So we had to find the brightest pinkest shoe that we could. Things that are pink are easier to tolerate!

I have the Biggest Littlest Pet Shop Fan!

Right before her birthday Hailey fell in LOVE with the Littlest Pet Shop animals! We started off with 9 but ended up with 50+ pets. There was a little girl who was done playing with her pets and donated them to Hailey. At first Hailey tried to name every single one of them, but it was getting a little out of hand and pretty darn tough to try and keep track. Now we have names like, pink bunny, brown puppy, zebra guy and fishy...

 Every time we leave the house Hailey gets to pick 1 pet to come along with us for the ride. She was kind of bummed they don't get to go to school with her.

 These pets are very loved and played with EVERY day.

They almost all fit inside of one of JOSH's old shoe boxes! 

The 6th relapse.

Most of the people who read my blog read my posts on Facebook. It's just so much easier to post a little blurb on there and have everyone caught up. I still feel like people don't really read this blog. I'm told they do though...It's odd for me to think that because this was once my diary and everything was so private.

Two weeks ago when I went to Hailey's room to get her ready for the day. I noticed she was blinking a lot. When I sat her up she couldn't hold herself in that position and when I put my hand on her back she started to do her little body relapse circles she does when things are going to start to go downhill. I just looked and her and said, "oh no..."

I texted Josh and pretty much wrote, She's relapsing again. He had said that it was early in the day give her some time to wake up more and let me know how the day goes. I texted back and said, "I've seen this 5 times before, I know what it is. It's happening again." Hailey's speech was slow and she asked if she could crawl. I put her on the floor and she bobbled. I put her in the crawling position and just yesterday she would take off, this day she fell over. She was very lethargic. All things/signs we've seen before. 

Since there wasn't anything medically that could be done for her this would be the first relapse that we would not admit her to the hospital, no IVIG treatment, no poking, no blood draws, no sleepless nights in a hospital room alone, just me and her with me crying myself to sleep.

Dr. Sarah did come over in hopes that maybe an adjustment on Hailey would either relax her or even reduce the duration of the relapse. We are so grateful for Dr. Sarah. When Hailey can't see Dr. Sarah, Dr. Lisa is there for Hailey as well. 

She started the vomiting and it seemed to stay with her for a longer time then any of the rest of the times. Her eyes were "getting stuck." Another thing with eyes was that when she was sleeping she would get startled and do a moro reflex followed by her eyes rolling up in the back of her head and not being able to snap out of it and focus. That was pretty scary, still is.

I called her pediatrician to ask for a refill on anti nausea medication and to let her know about the eye thing. She said that she would suggest an 24 hour EEG. She also suggested maybe hyperbaric treatments, and maybe also going to a children's hospital in California that does research studies and trials. 

It's a tough call. Doctors tell you that basically there is no cure, treatment or even hope your child will ever get better or survive past age 8 so you try to live life and be a family and enjoy your time together. Then on the other hand what if there is something more I can do, some where else I could take her. Do I want to live this life we have in and out of hospitals again? If we travel I want it to be fun, not be to go to another hospital to be poked and scanned and have her cry. What if they suggest something that could help? What if it's a brain biopsy again? What if we put her through more tests and they find what they always find...NOTHING. We've done 3 lumbar punctures, 8 MRIs dozens of blood draws, 4 IVIG treatments, 1 PIC line, 1 Central Line, and a blood transfusion all in less then 2 years! It's too much right now. 

There is 1 thing that was different this time around and it's kind of bugging me. I don't know if there was too much going on with Summer School on the horizon, Therapy appointments we went to, the days just weren't long enough for everything I had to do, but the thing that didn't happen this time was that...I didn't cry. I was tired and I was mad, but I did notice I didn't cry that whole time. 

I cry every time. Why not this time? There is a time when you want to do everything in your power to make your sick child better and you cry and you're mad and there is nothing you can do and then you just want it all to be over with. You want the pain to end. But when that pain ends I think another begins, so you are just stuck. "Living" each day. It gets worse for me when I have nothing to look forward to. We took Hailey to Disneyland, we went on our Make a Wish trip, we had family come visit for Hailey's birthday. Those were all things that kept us excited for each day. I also wasn't alone, I got temporary breaks. When this relapse happened it felt like it rained on a parade we just started. Hailey was sitting up on her own. She was crawling again and just as fast as the sun sets and rises it was gone again. All that work, another memory now. Hailey has to start fighting all over again and I can tell she's tired, but she won't give up, so we can't either. 

Josh says he wants to take Hailey to the Grand Canyon this year. While that doesn't sound like the most exciting thing in my eyes for a 5 year old, it's something he really wants to do with her so maybe I can try to look forward to that? This month is packed with appointments and school, but I'm hoping to get a break in August. 

Josh and I are also trying to live a Paleo lifestyle while I just call it a diet. I hear that people who are Paleo are be more energetic, sleep better, or just feel better in general while you help reduce the risk of lots of health problems people are running into now a days. I might not be very happy or enthusiastic about it (in fact I'm kinda bitter about it), but I only want to give it a whirl for 45 days. If anything else happens besides losing weight I might consider maybe doing a 80/20 diet. Giving up sugar cold turkey along with my Cherry Coke Zero has been BEYOND rough! Finally after 3 weeks I've lost 8 pounds so I have 30 days to go! 

If Hailey can learn to live without the regular diet she was used to then I guess I can at least give this my best try, but seriously no soda is HARD! 

Therapy on a Horse

I wrote about the benefits of HippoTherapy previously and how excited I was to get Hailey involved. We have finally been able to have this be a part of Hailey's many therapies. Bright and Early on Saturday mornings we head out about 45 minutes away from our house to go see, "Hailey's Horse." Now I won't lie. At first this was pretty scary for Hailey and me both. They pretty much just throw your kid on a horse and expect it to go well and it did not go well for us. I thought they would introduce her to the horse tell her what she was going to do and so on...but no. That did not happen. So the first lesson had a lot of tears involved but they promised it would get better. I certainly wanted to quit and find another horse therapy place, but Josh kept telling me, "they know what they are doing."

The first 2 lessons were really rough, but then Hailey had her relapse and I was 95% sure we wouldn't be able to participate anymore. They do NOT do tandem riding and Hailey was having such a hard time holding herself up. She spent the whole time crying and laying on the horse. I felt so bad for her. When I asked them to hold her up, they told me that she has to want to do it on her own. That's hard to hear because I wanted to say, "She wants to but SHE ISN'T ABLE TO!" When she did sit up her head kept bobbing around and I kept asking Josh to tell me if this isn't for her, and he kept saying, She'll be fine."

 Last week she did a lot better, but it was so hot out! She did hold herself up 75% better then the week before. She did lay forward a few times and cry, but again her strength isn't there right now. Her head did NOT bob as much as it did last week and we were happy to see that improvement!

We get a week off this week so we won't be able to see Pablo because of the holiday. We will be back the week after and see if things will get even more easier on the both of us! We won't know unless we try.

Resources

There are a lot of things that we have bought or were given for Hailey that I would have never known even existed. With the help of friends, family, strangers and the internet we have found the things we've needed. I thought I'd share the information that I have gathered in case someone else out there might need it. Here is what I've come across:

*The items listed below are ones that we use in our home with Hailey. Items listed below have a description of the item and our opinion of the items. If you have a better item or a better price on an item we'd love to know about it!


The oils that I use on Hailey are DoTerra Oils. You can order them HERE

I use:

Melaleuca & DDR Prime - Daily (Has Regenerative Properties)

Frankincense - Daily (I put this on the brain reflex points on the feet and brain stem) 

Breathe - If she is congested

On Guard - Daily

Balance - Daily

Melissa - If someone who's been sick is around her. 

Clove - Muscles

Peppermint -- Muscles

Lavendar - Heart

WinterGreen - Rubbed on her calves with Fractionated Coconut oil. 

ADAPTIVEMALL.COM

STROLLER:
A few times when we are out somewhere with Hailey and she isn't in her wheelchair often times someone says, "ooh, that's the kind of stroller I want." I often think to myself, "uh...no you don't." Not because it's not a good stroller, but because it's a special needs stroller and because it's EXPENSIVE. Well everything that has to do with special needs or kids with disabilities is expensive. You just got to get over it and do what you have to do.

When we were looking for a stroller for Hailey we didn't know where to start looking. When we were at Primary Children's Medical Center Josh saw a stroller that would work for us and the brand was called Maclaren. When looking at the Maclaren websites the strollers were reasonably priced. Reasonably in terms of being for special needs, but the ones on the website weren't  for special needs...My mother in law was the one who did the leg work on the stroller for us. She found the website www.adaptivemall.com and found the Special Tomato EIO push Chair:

 on the website they even have a comparason between the Maclaren and the EIO:

So after doing the research and based on Hailey's size and weight and how much use we'd get out of it we went with the Special Tomato EIO. The only time Hailey uses her wheelchair is to go to school and when we sit at the table for "dinner." All the other times that we are out and about or when I take her to therapy or appointments we use the push chair / Stroller. It folds up KINDA small and it's not TOO heavy. It works for us!

When we brought Hailey home from the hospital in October after her g-tube was placed she laid on the couch or in a bean bag chair, but mostly the couch. I hated having her constantly laying down but she didn't let me hold her, and she couldn't sit up on her own. At the hospital they let us use a Tumbleform chair which allowed Hailey to sit up on her own. I knew as soon as I saw that, it would be beneficial to Hailey. One thing about these chairs is that they are made to order, I haven't found a place that sells them ready made. By the time I found this chair and we had the money for it it was February before we got it. Hailey uses this every day. She does her feeds in the chair and it works great.

TUMBLEFORM SEAT: 

I wrote a post earlier in this blog regarding how we bathe Hailey. We have this bathing chair, and fortunately we didn't have to do any research on it because it was donated to us! We were extremely thankful to be given this gift for Hailey. Bathing can not happen without this chair!

BATHING CHAIR: 

Britax Traveller Plus Special Needs Car Seat:
We were able to get this Special Needs Car seat for Hailey thru PCMC in Salt Lake. You can also order one online...Not cheap, but necessary!

RIFTON STANDER: 

 In the hospital during therapy Hailey would use this Rifton Stander. The Rehab doctor said that this would be the most helpful thing for Hailey to stretch her calves and hamstrings and to help aid in digestion. The only thing with this was that it caused Hailey's Moro Reflexes to go CRAZY. She hates the stander, but we have it, and it was NOT cheap!!

WHEELCHAIR: 
We've had 2 wheelchairs and the original company that suggested her first one didn't do a very good job at it. She grew out of it with in months and it also wasn't one that "grew with her disease." I did the research on this one and found that this one made the most sense. My complaint against it is that it doesn't fold and it's SO FREAKING HEAVY!!!!

G-TUBE PADS: 
When Hailey had her tube placed they told me that I should just use split gauze under the button above the skin and tape. Hailey has an allergy to tape and the gauze didn't stay without it. My friend Mary told be about g-tube pads and we haven't used gauze since!! G-tube pads are absorbent, functional, and stylish. There are a lot of companies, especially Etsy ones that sell these. I've used:

3 Tiny Blessings
Belly Buttons
Make Lemon-aid (not active any longer)
If you just google it or look on Etsy you will find tons and some are REALLY cute (and expensive)

ACID REFLUX Wedges:

Hailey had used these wedges when she slept and we bought them on Amazon. Amazon is a great place to get almost ANYTHING you need! A few other things we have bought or received on Amazon are:

Tranquility Diapers - These diapers are velcro and super absorbent. They don't make diapers that fit Hailey that you can pick up at Target or Walmart and these are delivered to your door!

No Rinse Body Bath - When there are times that Hailey needs a good scrub, but we aren't able to bathe, this stuff comes in handy!

Pressure Pad and Pump - When Hailey wasn't able to rotate herself in bed this pressure pad was awesome at preventing bedsores!

Chux Pads - We use Chux pads everytime we change a poopie diaper. It's just too messy not to and these help out with the mess.

Wipes - Another Amazon saver are wipes. We are not wipe snobs we don't care which ones we use/get but buying the bulk qty can be a money saver.

Other resources:

HippoTherapy: I'll update this once I decide if I like the place we are going to or not...LOL!!

Make a Wish Foundation 

Give Kids the World

Children's Therapy Centers - 750 Coronado Center Drive, Suite 120. Henderson NV 89052. Phone number is 702-564-4116. *The reason I put this down is because the first 2 rounds of Therapy Hailey was given we had no choice in the place we were to take Hailey through our insurance. We were sent 

to a geriatric rehab center that was not the place she belonged. This place is GREAT! 

There are still a lot of places I need to find out there. These places are on my list of TO FIND:

Swimming/Water Therapy

Day Camp or Day Care for Special needs/medically fragile children. (I want Hailey to interact with kids during summer)

I want to find a PVC or Water Wheel Chair so I can take Hailey to the Splash parks

Gait Trainer

MORE TO COME...!

Emotional

A couple weeks ago we took Hailey back to Utah for a follow up appointment with her Rehab doctor. This doctor is the one who had told us back in October of last year we had to start planning for the nearing end with Hailey.

Hailey was so stiff back then that she was on a pretty high dose of muscle relaxers (Baclofen) and was reaching her max fast. When we had seen this doctor in November a month later Hailey had the Botox shots in her calves and a reduced dose of muscle relaxers. She also prescribed the AFO's Hailey wears.

We saw the Dr. again in February and Hailey was doing better and didn't need Botox again, but still remained on Baclofen. Well from February until now I had thought that Hailey was doing great. We took her to Disneyland, we went on her Make a Wish, we started Physical and Occupational Therapy, I increased her days at school, and she had her 5th birthday. Not to mention that she has been sitting on the floor without assistance for longer and longer periods of time!! She does tend to timber over without notice, but that's what all the pillows are for. So when we took her to Utah I was expecting to hear that things were going great, and that we (I) was doing a great job and her tone and clonus is good...I didn't hear any of that.

I guess I tend to only hear the bad things. Her tone is still elevated, she is very tight in her hips and hamstrings, she needs to be stretched more, I guess I was doing it wrong? We had to decide either to give Hailey more Botox and the same amount of Baclofen or we have to increase the baclofen and tighten the stretch splints. Well I didn't want to do either of them, I thought things were fine the way they were with the dose Hailey is on and the splints, but what do I know? I had told Hailey she should have been born to parents who were medical professionals.

Josh and I had went through the decision of whether or not to get a DNR (Do not resuscitate) order in place for Hailey. We both decided it was something that needs to be in order because her disease is so unpredictable. The Dr. will help us to get that placed by the time we go back in August.

The Dr. was very impressed with the sitting up. She had never seen Hailey out of a bed or out of a wheelchair before. She even saw Hailey bare weight and noticed how tall Hailey is. Nearly 4ft tall and 61 pounds.

Hailey being nearly 4ft tall and me being 5ft some is becoming kind of dangerous. Every morning that it is just me home with Hailey (4 out of 7) I have to carry her down the stairs. It's easier if I just do it without thinking to much about counting the steps or attempting to look down while I step. In addition to the anxiety of the responsibility of getting Hailey down the stairs safely I worry about the constant pain I feel in my back. Hailey is going to be measured for a gait trainer that we will be able to use at home. That's a good and bad thing. It's good that Hailey will be some what independent, but we have very little space downstairs. She'll have to do circles if she ever gets the motion to propel herself. We need to get a 1 story house that will aid Hailey in using the gait trainer. I want my house to be boundless for her. Everyone knows the housing market is kind of down in the dumps so this is some added stress for us all. We are right in the middle of the Dr and Therapy appointments we have. If we find a house, what if it's farther away?

We don't have a wheelchair van. When I take Hailey anywhere I have to lift her to the car, and into the carseat. (there's that pain in my back again) I called about the grant for the modification of a van that we applied for in January and they said that it could be as soon as next year that we'd hear back from them. Um...next year isn't soon. We are kind of running short on time here. Not having a car for Hailey, so that I can take her to her appointments is another ingredient in this recipe for stress we're cooking up.

You know how people always tell you to look on the bright side, make the best of things, be positive? Easier said then done!

I've been so exhausted lately. I accidentally left out Hailey's medication that needs to be kept refrigerated. I haven't attempted to cook dinner in MONTHS (a year). Dinners are a thing of the past. I often find myself eating an apple and peanut butter and calling it dinner. I left out Hailey's therapy dough and it dried out. I'm forgetful. I will be downstairs, know I need something from upstairs, go upstairs and have no clue as to what I was suppose to get. It makes me upset and I cry. There is no nurse to help, no family to call and help, no maids to do the laundry, vacuum, or dust. It's a lot, and I know this is just me complaining about things that can not be changed no matter how hard I wish it. Through our insurance since my child is a "critical case" I get 15 minutes every 3 months to talk to a therapist. I think parents should be given automatic therapy sessions when your child has a terminal disease. Where is all the help at? I need it! When I told him about me being forgetful and tired he said: If you forget when you put your keys it's not a big deal. If you find your keys and don't know that they are keys you have something to worry about. (I guess I'm not too bad yet...)

So looking on the bright side:

Hailey has been doing great at Physical Therapy. She amazes her therapist with her will to fight or her hard headedness. When she is doing an activity and appears to be shaky they will ask and encourage her to take a rest break to which Hailey ALWAYS replies, "No!" I know I don't understand anymore about brains then what I read on the internet, but I had to ask and see if anyone knows how Hailey can go back and forth so much. 8 months ago she was a wet noodle. I couldn't hold her, she couldn't sit up, she was floppy. She's only been going to PT for maybe 6 weeks and she's starting to sit up on her own again. How is this possible? White matter doesn't regenerate itself. I know her pathways are "staticky" and that's why everything she does is so slow, because there is a "faulty connection." One of her PTs told me that there are kids that go through milestones from the beginning of life and when they have something go wrong with their brain it's easier for those children to re-learn something they already knew. Children who never "learned" something and have something go wrong in their brain have much more of an extreme difficulty to learn something they never knew before.

They have been working on re-introducing Hailey to crawling. She can not go from sitting to a crawling position yet, but once she is put into hands and knees she can hold that position. Hailey has this thing about falling without notice. We've had a few face plants, but luckily there are 2 people helping to catch her when that happens. Hailey's middle name should be determination. I'm hesitant to practice at home with her and our hard floors. I'm looking into getting a gym mat like at PT.

We've been able to take her off sleeping medication that is sedating and just using melatonin at night. We are on our way to 6 hours of sleep a night. It's not true deep sleep, but we'll take what we can get!

Hailey has been doing great in school. She was able to be out of her wheelchair and sit in a cube chair at circle time with her friends. Her speech teacher says that Hailey participates 100%.

We haven't been able to get Hailey into a Speech and Food Therapy program yet. Las Vegas is running low on pathologists. It's in the works but nothing in place as of yet. Hailey has been "talking" more and more. I've always been able to understand her, but when she converses with other people and they look at me for a translation I guess it's not as improved as I have thought it was. She says funny things all the time. I remember when she wasn't sick and she wouldn't listen to me when I talked to her and I would tell her to look at me.
Hailey was up early before Josh went to work and he put Hailey in our bed before he left. I was awake, but had my eyes closed in hopes she'd fall back to sleep. She was calling, "mom...mom...mom" when I didn't answer her I hear, "mom.....wook at me" (her L's sound like W's)

I guess it's always good to vent a little, it helps you re-think what you're griping about.

To end this very long post on an exciting note. I'm working on transferring videos of Hailey on to my computer rather then have them linger on my phone. So many people want to see what Hailey is doing now and I want to show them. It's a work in progress, don't know how long until it actually happens but it's something I would like to do. I need something positive to look forward to. I love sharing my Hailey.