Wednesday, June 22, 2011

New equipment for Jacob

Today the physical theripist was here with a representaive from Custom Mobility to work on a order for Jacob's equipment. All of his current equipment is loaner stuff. Now that we have decided what he likes best it time for them to rape the insurance companies for 1000's of dollars. I am most excited about his wheel chair getting order, though it also feels like a punch in the stomach at the same time. Simple things that come unexpectedly trigger the verge of an anxity attack. Feels like the wind has been knocked from my stomach. This is how I felt this morning when the Custom Mobility guy was walking up the driveway. You would think this feeling would only come when you are reminded about your baby being gone, or when your triplets are called "twins" (kinda doesn't bother me anymore), etc...I except Logan being gone because nothing I do in this world will bring him back, but I don't think I will ever except Jacob's cerebral palsy. His issues will never be "fixed" but I do feel like if I had all the money in the world he would have 1000x chance of a better life. I wish so badly I could just have another baby and do stem cell treatment on him and do the intensive therapy sessions. I wish I could have a hyperbaric chamber for him. There are so many things that are out there to help him that are simply out of my reach. It kills me. So, I live in the things I can control which is raping the insurance to atleast get him all the equipment I can possibly make them pay for. So this is what we have on order now.
The wheel chair will look similar to this one. It is called a Quickie Zippie 2 I believe...some of the equipment will be a little different to adapt to Jacob's needs better. His chair color is black opal. It will have that glitter shimmer thing on the metal when it moves. I was told that the seat and back comes off so it will fold up small enough to fit inside my van.
The rest are stock photos I got off google of the other equipment he has at home as loaners, but this is what we are getting:

This is the Tumble Form 2 Stander. I really like it. He can stand as pictured here or flipped the other way. I like that it can be angled. He don't have the tray now, but he will be getting it when he has his own. I was told this tray is $800. That is crazy and I know the stander is $2000 give or take.

He already owns the tray to look like the one that comes with the stander, just shorter. We ordered this in all blue.

This is his bath chair. They ordered this with a stand he will not be so low to the ground when  I bathe him.
After the 1st of the year we will work on getting him a rifton pacer again. He has one now, but it is just about to small for him. These are hard to get because they cost more than wheel chairs. Some times the therapist have to submit videos of them walking in them with purpose for insurance to pay for them. Jacob used to take some steps in it, but has not in a long time. I don't want to give up on him taking steps though. I had a mom tell me her kids stood in 1 for 5 years before he made it move with purpose.

Jacob seems like he is getting sick. He is now congested and coughing. He vomited twice yesterday. So far so good today, but he is only one his 2nd feed. I slowed them down and he will probably only have 3 feeds instead of 4.

Andrew and Ava are well. Neither are sick.

Ava went for her 4 year old check up yesterday. She is 40 inches tall and weighs 44lbs. She gained 12lbs this year when a normal child gains 6-8. I hope to get this under control this year. I really don't want her to be like my or her father, but I guess she learns from what we eat. :-/ She is healthy. She got her forms for school, but she is slightly behind for her age. This is like a knife in the heart for me. I used to feel like she was so "advanced" she walked so early. She could carry on a conversation and talk in complete sentences when she was 2. Everything pretty much went down hill when the babies came. I did not give her the extra attention and focus on things like I used to. So, I did spend $65 a week for the entire school year sending her to school part time to help with her social and learning skills this past year and I feel like it did little to nothing for her. She pretty much learned how to color. She counted to 6 for the doctor, but does not recognize the numbers. She sang her ABC's for her...omitting parts of the middle. This she could not do a few months ago. She has come a long way just by saying them. I don't think she has a learning problem just lack of stimulation. She does not recognize letters by name, but thanks to "The Letter Factory" DVD by Leap Frog she can tell you most of the sounds to the letters, just not the name of what letter it is. She also has developed some speech issues. Seems like she used to speak clearer, but now somethings are harder to understand. Like when she says "school" she say "sssdool" She also can't write any of the alphabet or her name and apparently she is suppose to do that too. Next year she has Voluntary Pre-Kindergarten Monday-Friday for 3 hours a day. Hopefully she will be "caught up" by the end of next year.

Christine and her family are do okay. They had a good vacation. Her daughter went to stay with her aunt for a month. This does not make Ava happy. So, it is just her, her husband, and her  2 boys here now. She goes for her MRI tomorrow to see if the tumor on her brain stem has grown or not. She has a bunch of doctor appointments tomorrow. Her feet have started to swell. This concerns me. They started doing it a few weeks ago, but I thought it was because she had been standing for a long time...really there is no reason for the swelling now. She is going to kill me for this, but she has put on quite a few pounds from the steroids, depression, etc. So I don't know if the water retention is her meds, vs. the weight she has put on. Things are starting to settle down around here. Hopefully the coming months will lead to some healthier eating habits for the entire family.

Please keep both our families in your prayers. God knows are needs. I trust in Him to keep our heads above water and lead us to where he wants us to be.

1 comment:

  1. Please don't be so hard on yourself regarding your daughter. You did your best, and that's all that you can do.

    The equipment looks wonderful!

    I will pray for your friend.