Monday, March 29, 2010

I would just like to say...

That since my post on Wednesday I have read a book and half, watched almost NO TV, walked probably ten miles (intentionally) and my house has been the cleanest its been since we moved in. What the heck?!?! Partly due to my awesome husband who was on spring break last week (that'll help).

Livi is doing great. She wants to be on the floor trying to move almost all the time--something I almost always let her indulge in. The exceptions are when she needs to be napping and when we're in a restaurant (somehow not appropriate).

The weather is amazing. The fam is healthy, and we are all hands on deck to pull this birthday party off on Saturday. Can't wait to celebrate with friends and family. Wish Nana and Papa could make it, but we will send tons of pictures.

What a great start to the week!

Wednesday, March 24, 2010

Letting go of the dream

When I was pregnant, or really before that, I had these visions of pushing a stroller, as a size 4, with my hair done, in heals with a cooing baby. Gone are those days. Today my dream is getting a shower in before noon, wearing matching socks, with hair that has been cut in the last four months and a shirt that does not have medicine or vitamin stains on it. My house is not as I would decorate it with chic vintage finds and dust-free knick knacks. It it littered with medicine syringes, oxygen tanks and a pediatric stander that looks like a torture device. My kitchen is littered with dirty dishes almost constantly and my room looks like my closet threw up my clothes all over the floor--all the time.

Over the past year I have quietly but staunchly held the view that having a special needs child does not make my life different than other mothers.Yesterday and today through books and conversations that view has been shattered and I am in the midst of building a new and more accurate view and goal for my days. I read my first book about parenting a special needs child. I guess even the name "special needs" means different. I just didn't want to admit so. All these parents say that they can't keep their house clean either. The difference is that they admit it. Now I am too.

Here I am world. Kelly Key. I am a mother to a wonderful girl who is about to turn one year old. She does not operate physically above a 3mo olds standards and requires constant attention when awake. My husband is wonderful but absolutely busy. We have the best friends and family in the world. My house is not clean. My floors are muddy from the dog (who is the culprit for the hairy couches), there are medicine bottles and oxygen tanks everywhere. Most often I do not put makeup on in the morning because the physical therapists do not care. I make a good dinner maybe twice a week and my car is a disaster. But I am proud of my life and my family. And where I would not accept help, now I require it. I am a constant work in progress and mostly a complete failure, but I try the best I can at everything I do. And when it is not enough, I will now learn to call someone else and ask for help. And that is okay. It will have to be okay.

Sunday, March 21, 2010

Lazy Sunday

Thank you all for your prayers. Baby Isaac has gone to be with the Lord yesterday afternoon. Please continue to pray for his family.

We planned to make it back to KC this morning, but part of my family went last night and saw three snow plows on the side of the road waiting to be pulled out. Snow plows. Seriously? A two hour trip took them five, but they made it. So, in no hurry, we will be coming back to KC tomorrow. As a result, this morning was very lazy, but fun. After some crawling work Olivia was so tired she fell asleep on the floor. Well, words don't do it justice. Here are some pictures. Happy lazy Sunday to everyone!

Friday, March 19, 2010

Please pray for Isaac's family

Though appparently yesterday was a great day for our little friend, today has proved to move in the wrong direction. His parents are going to have to make decisions about whether to put him back on the vent and whether to prolong his life for themselves or to let him go soon. It is a very, very sad situation. Please just pray for wisdom--that is their request.

Traveling sucks

So, this is why we haven't gone out of the city in six months. Last week the ER. This week our home health supplier decided they were going to CANCEL my request for oxygen delivery in Joplin. I guess that happened yesterday because I talked to a guy yesterday on the phone to make sure it was going to happen. It was. Then I was told this morning that it had been canceled and I have been on hold for thirty minutes. Now, I'm not generally an angry person, but someone is getting a piece of my mind. Especially since we probably won't be able to safely get back to KC tomorrow since its supposed to snow 6-8 inches this weekend after being 60 friggin degrees today. What the heck?!?!?

I also wanted to know if you guys would pray for a friend of mine. His child is very sick with a genetic condition where he is only the second baby to be diagnosed with it in the united states and not one child who has been diagnosed with it has lived to be 2yrs old. He is currently 8 or 9 months now, I think and is in the hospital with pneumonia--which is very severe for him. Last week they gathered the family thinking it would be his last night and miraculously and slowly he is getting better. Praise the Lord! They may get to take him home by the end of this weekend. As you can imagine, any time they have together is precious. The baby's name is Isaac. He is a very precious little boy.

Thanks, and when I finishing chewing someone out on the phone I will let you know the outcome. Enjoy today, for tomorrow it snows!

Sunday, March 14, 2010

Problems on the road

We have been looking forward to this weekend for a long time--back in Fayetteville for the first time in almost a year to see our wonderful friends. Yet, a dark could descended when we had to take Olivia to the ER last night for her almost 104 degree fever. She was very uncomfortable and upset and so were we. I don't remember feeling that worried any time lately. We called our friends in KC to pray and all of a sudden, while still in the waiting room, a 30 min nap caused Livi's fever to come down to 99 degrees. They ran a bunch of tests for infection which came back (surprisingly--wait, not) negative. Who knows. No infection. But they did do a chest x-ray that showed a little bit of stuff in her lungs (which is I think is mostly what it looks like now) so they gave us some antibiotics and at 2:30 am we went back to where we are staying. Since then no fever, no high heart rate or low oxygen (which is measured by her pulse-ox she is on all night).

The mystery of my daughter continues. Yet, we do know this, that the Lord chose to heal my daughter. Sometimes prayers are answered the way you want. Sometimes not, and we get over that, but sometimes, just sometimes, the answer is "yes, I will".

Thursday, March 11, 2010

Mr. Legs has been resurrected!

My guess is most people won't know what I'm talking about, and at the risk of putting a mental picture in everyone's head--I guess I 'll tell you.

At some point in my very early years (after having casts on both my legs at 6 mo) I got a pair of leg braces--yes, the Forest Gump kind--exactly like that if you must know. There were metal bars up the side, Velcro restraints to keep them on at the waist and on the legs and shoes attached at the bottom. Anyway, I was under the impression that he had died in my parent's attic a long with all our other old stuff long ago, but I was wrong. Yesterday at PT our therapist brought out a pediatric stander we had seen before, but was clearly too big for Livi. It was then discovered that the Velcro restraints were adjustable, so we adjusted them. Now, normally, our medical and therapeutic supplies are brand new, but this was right there, free, and they wanted to get rid of it, so I took it.

--Break in the story: since Livi is not spending enough time upright we are working her up from about 15min in the stander to some day the goal being 1 hr at a time in the stander.--

It actually does look like a torture device, but less so in the these pictures and at therapy when Livi FELL ASLEEP IN IT! Fell asleep standing up, now thats a new trick. It has be Mr. Legs reincarnated or something. The similarities are (from my memory as a very small kid) incredible! I tried to find a Mr. Legs comparable picture on the internet. To no avail. Mother, you are not allowed to try and dig up any pictures and get me to put them up, people can use their imaginations. Of all the things I hoped to pass down to my daughter, this is not one of them.

Also, Tugger spent the night in Livi's room last night after I couldn't get him to leave. I brough his bed in her room and he slept in there all night keeping an eye on her. She was VERY tired after being awake literally for 12 hours or more yesterday. Way above her norm. Her sats are kind of low, but Brian says he thinks its because she is tired. Jacked her oxygen up to a quarter of a liter from an eighth and keeping at eye on it.
Also, a picture from a week ago of therapy at home with Ms. Sherry. Livi is on a therapy ball.

Tuesday, March 9, 2010

On the agenda this week

Yesterday we visited Special Care clinic, but are sad to be missing our dr.- she is on maternity with her new baby boy, but, the fill-in dr. was really great. We started talking about Livi's nutrition, and even though she is gaining weight slower than before, she still needs to slow down. Isn't it so funny all we wanted when she was born was for her to gain weight for like five months, and now we can't keep it off! We also got some great news. I talked to a social worker about WIC and we actually make too much money--lol. Sorry, I never put those things in, but its still funny. So, because Livi has a "nutrition issue" our medicaid is going to pay for her pediasure when she turns one. They ship it through apria who is our medical provider. So, not only will we not have to pay for her food, but they ship it to our door UPS every month. I don't even have to go to the store! Apparently they are sure that insurance will pick it up--they confirmed yesterday, but in my mind there is still a chance we will pay--just in case.

We met with our CCVI teacher today. We mostly did an evaluation where I answered questions about Livi's areas of development, but it was a good meeting.

Tomorrow is PT at mercy and then OT at home. Full day--will probably exhaust Livi and me both, but I think it will be good. I can't wait to show our PT how much weight Livi can hold on her own on her hands and knees. We are also working on walking. She is starting to learn to move her feet forward when I shift her weight while she is standing. Instead of shuffling she is actually starting to pick up her feet and move them forward!

Oh, I almost forgot. Also on Monday she got fitted for her BiPAP mask. Next week she'll have to wear it overnight to make sure they have the settings right. I would be dreading it, but she fell asleep two minutes after they put the mask on yesterday. The nurse said thats what happens with kids who really need it-- they are comfortable enough to fall right to sleep. Go figure.

Thursday, March 4, 2010

More information = More confusion

The more I try to learn about the types of problems Olivia might be having, the more I am confused. There are a zillion different types of processing disorders having to do with the eyes. I'm not even sure thats exactly what is going on, but I think so. Apparently, often after seizures these pathways from the eyes to the brain have trouble. Olivia doesn't even have a diagnosis of an ocular processing disorder, but they suspect one. CCVI can't diagnose it, that has to come from your neurologist, and some neurologists don't even believe its an actual medical diagnosis. Others try to diagnose all their patients with a processing disorder. I feel like our neurologist is very patient as far as having a diagnosis and would not over-diagnose. We don't even see him again until the first week of April.
I want so badly to understand what she is going through and what the world looks and feels like to her, but she can't tell us, so its kind of a guessing game. I want to give her the best shot at succeeding in life and having the best tools and the best care, but ultimately I can't know.

Despite my defeated tone, today was a very good day for her. This morning she played, actually played, for two hours before her first nap. Usually she tires after 30 min. I did the exercises the CCVI teacher gave me yesterday and it seemed to make a lot of difference. When I put pressure on her shoulders and guided her from the elbows she began to play with toys after a few idle attempts. After that I just had to hold her elbows and she controlled her forearms and hands. So, this new concept seems to be just the thing for her and really exciting for me, except that its utterly exhausting. Every second that she is awake I feel like I am cheating her unless I am right there helping her play because she can't do it on her own. Thus, I barely got a shower today and my house is a disaster. But, Olivia was WAY more productive and was actually awake a lot more during the day than usual.

Please pray for me. I love my daughter and am so grateful to have such an integral part in her life and education, but when someone's every minute depends on you, it is tiresome as rewarding as it is. I am confident she WILL begin to do things on her, as she is almost bearing all her weight on her hands and knees and more interested in practicing crawling, playing for a minute or so on her own and seeming more interested in the world in general, but it will be a long road. I guess we've got to buck up and strap in, cause here we go!


This is the only one that would download right now. They are incredibly big files and only work about one out of every ten times I try. So, here is one. We have about a hundred different ones. Will get them to you eventually...

Wednesday, March 3, 2010

My eyes are opened to the world of visual processing disorders

Our CCVI teacher came for the first time today (sorry, Children's Center for the Visually Impaired). She was wonderful! Her visit is going to change the way I interact with my child, what we do during the day, and how Olivia learns.

For a recap: Olivia's eye structure is fine. She is not blind. She has great vision. However, the seizures make the path for information from the eye to the brain very difficult. So, while she can physically see things the same way you and I do, her brain does not always tell her how to interpret that information quickly or correctly. In other words, she doesn't always understand what she is seeing. Often an object with noises and bright colors is too much to take in and Olivia will turn her head away because the object is too difficult to process. When she is ready again, she will look at the object and take in more of the information. Make sense?

Until now I think I have been continually under-educating and overstimulating my child. I assume because she cannot tell me what she wants that she does not know. That is not true. The teacher today taught us how to use hand signals (which I know, but did not think to use) to allow Olivia to tell us when she has had "too much" of something. We'll start with one signal. We also learned what kind of toys to present to her, and how to present them. Often a backdrop of either white or black and then one simple colored toy (preferably sparkly and orange, red, or yellow) in front of the backdrop. Often Olivia would sit and look at the toy, also follow it, but would not feel intrigued to touch it until after a minute or two had passed--however long it takes for her to realize what she is seeing. Interesting, right? I had been flashing toys in front of her thinking she didn't like them!
We also learned how to appropriately engage her hands in a way that is not obtrusive or invasive to her, to always talk to her, telling her what we are doing during the day including saying "left" and "right". I feel like a new person. I feel like I can give my child a better present and future. I feel empowered and educated.

Nevermind that we will spend all her waking hours getting in all of her therapy--its mostly play-like things anyway.

She also is working on crawling. She is very eager and I am excited to show our therapist (who is also coming today) how Olivia can almost hold her own weight on her hands and knees. This is a very exciting time for us.

We also should be picking up the pictures our friends took last week sometime this afternoon. We, of course, will be sharing some with you all.