Sunday, January 31, 2010

My new dilemma.....

I have a question for you all. I'm hoping you can help me find a solution to my new dilemma. MK uses a wheelchair as you all know. She cannot stand up or walk on her own, but she can hold onto things fairly well. Now that I've got the new baby, I don't know how to take both of them somewhere by myself. I can't very well push a wheelchair and carry a baby carrier by myself. So, I'm trying to come up with ideas. I tried to ask my kids. A said "that's a tough one." and walked away. MK said "I will carry baby!" (bless her heart!)

I have thought about getting one of the sit and stand strollers that have a little platform and seat attached to the back. I can snap the baby's carseat in like a regular stroller, and I think MK might be able to hold on and sit on the back...though if she can, she wouldn't be able to do it for a very long time.

I've also thought about a double stroller. Maybe even a double jogging stroller. But MK is starting to get a little big for strollers (she's almost 5) and the baby is very small.... I'm not sure how that would work. And MK can't leave the baby alone to save her life, so I'm not sure I want the baby with in her reach.

I've thought about getting one of those baby carriers that you strap to yourself so I could push the wheelchair. But then I'd have to take the baby out of the carseat every time.

So far, I've just avoided having to take them anywhere together by myself. But, that can't go on forever. Have any of you have experience with any of these scenarios? Do any of you have any other ideas?

Sunday, January 17, 2010

To be a Sunbeam? Or not to be a Sunbeam? That is the question.

I have been trying to decide if JT should move out of the nursery into the 3 year old class in church. I would really like to keep him with kids his own age. He has come so far. He is the type of kid who wants to move on from "baby" things before he should. For instance, he is a super messy eater but try as a might I can't get him to wear a bib anymore. He makes it clear that feels like he is too big.
But he doesn't fit into the new class very well. The oldest girl has caught on that he is different somehow. She asks about his legs. It is only a matter of time before the other kids wonder too and they begin to think it is weird that he doesn't talk. That's okay. We will have to do that no matter what at some time or another. But in class they do a lot of talking games. They toss a ball around and ask the kid that catches it a question. He can't really participate. Even if he managed to get out a sign without my help they wouldn't know what it means.
Today was the worst. I have to stay with him the whole time or he cries bloody murder and gets so worked up it even takes me 10 minutes to calm him. So there we are during singing time. JT loves music and singing. He joined in for the first time. A long drawn out shriek drowned out all other voices. The piano struggled to be heard over the unmelodious wailing emanating from my son. He loved it! He sang louder. He tried to continue singing after the song ended.
It was cute in a way that hurt my heart. I wanted it to just be cute (like it is at home) but he sounded so disrupting. He sounded like a bad kid. He's not a bad kid, what he was doing wasn't bad it was wonderful...but disruptive.
He has a really hard time sitting still in his seat. He is always turning around and standing up. Many kids that age have a hard time with this but they will sit after being told. He has a bit of a defiant streak.
Besides all of this, he is tired (we have 1 pm church) and after me putting him in his seat over and over again he is getting angry with me and begins hitting me. Today we left the class and I put him in time out on the stairs in the hall twice.
I just want to go to church. For the past 4 years I have not gone to church without spending the whole time wrangling my son or crying hysterically. I just want to go to an adult class. I want to know my son is with people who care for him. I want to know he is not being ignored (which is easy to do with someone you can't communicate with). I want to know he is being a good boy even though he will need help to be. This is made more difficult because my husband is not the same religion as I am and so he is not there to help.
All of this adds up to me out in the hall with him crying, no bawling uncontrollably, which is making JT upset and so he is worried and bawling too. It sure felt like the end of my rope. Just then the Primary President walked by. We had a good talk.
Next week I will come with a letter for all the teachers and the Primary workers explaining JT so they will be understanding and patient with us. The rest is up to me. I would love for him to go to his class with the kids his age but I don't think he can do it himself yet. I am thinking of having a helper assigned to him. I have heard some of you talk about it before but I always hoped I could help him make the transition without it (just another thing that makes us "abnormal" you know?)
I think I like that better than sometimes taking him to Primary, sometimes to nursery. I don't know, he may not be ready to sit still that long. But how many 3 year olds are? *sigh* I don't know. She said I could be as creative as I wanted to get this figured out. Just let her know and she will work around what I come up with. I just feel confused. It has been a long time since I have cried about JT's situation but when things change I feel like it is just as hard for me to transition as it is for him. Maybe I am too soft. I would love to charge in there and lay down what I need for my son but I can't figure out what that is.

Friday, January 8, 2010

A long time

Hello Tulips. It has been such a long time since I have posted or commented here. I follow you all the time and read every post. You are all so amazing, I feel as though I have little to offer any of you. Truly this is such an amazing place of strength and wisdom!

I thought since my little Bree is turning 3 next month I would put up a little update. When I started blogging here she was almost 18 months. She was not walking, crawling, rolling, or showing any signs of verbal communication. Today, thanks to wonderful Doctors, therapists and teachers she is doing so great! She can say about 75 words-that other people can understand and putting 2 and 3 words together to make a sentence. I can understand 95% of what she says- so I guess her word base is a lot bigger if you count what I can get. She can not only walk but run and jump )with the help of a DAFO). We are still working on so many things, but really she has come so much further than we were told she could/would.

I just wanted to say THANK YOU to all of you wonderful parents that post here. I learn so much from you, and you are all so truly amazing!

Sunday, January 3, 2010


I know it has been awhile since I posted. Life has been crazy. I am going back to school to become an OT. At the same time, JT is going to Early Intervention Preschool. He loves it. His teachers love him even though he likes to be the class clown (not always a teacher favorite). They could not believe that his brain damage is as extensive as it is. In fact, she said something very poignant, "Science has given him 25% of his brain, but God has obviously given him a much larger percent." Just how I have always felt. Science can give us a number but they have no idea the number our child has been given by their Heavenly Father.

This kind of brings me to our big news. For months I have been telling myself and others that I have done everything that I could to get JT to talk but I cannot make him do it. Watching Christmas Carol a month ago, an old idea hit me a new way. Bob Cratchit says of Tiny Tim, "He said he hoped people would see him (at church) because it might be good for them to remember on Christmas Day who it was that made lame beggars walk and blind men see." I just started crying.

I do not know what God has planned for JT but I have not done everything before I focus on getting help from Him. I am not talking just having it in my prayers, that was already there. Since I was out of school I focused on doing what my religion preaches. I also told my Heavenly Father that I understood if he had other plans but I have worked so hard to get JT to talk and I know I can not make him do it. But I also know that He has worked many miracles everyday and He has worked many miracles with JT but I selfishly would like another. All I wanted for Christmas was to hear my son speak.

It didn't happen before Christmas but a few days after he pointed at a picture of Santa and said, "HO!" I asked him to say it again but instead of giving me a defeated look as usual, he looked right at me and said, "HHHO!" I couldn't believe it! Then I asked him the question I ask everyday. "Who am I?" Instead of signing mom he said, "Mmmmma!" I cried.

It is still hard for him to get out the first sound so it is drawn out but he still says it. And of course family and friends have come up with all sorts of funny little things teasing the fact that his two words are ma and ho. ("The only two words a pimp needs to know "Ma' Ho!" etc) But I am able to laugh along with everything because it doesn't matter, my son can talk.

I hope to be able to tell you guys that he is saying more soon but for now I feel blessed. Happy New Year!

Friday, January 1, 2010

Good News!

Just wanted to make the big announcement here: I had my baby! We actually made it to 37 1/2 weeks this time! She is our heavy weight coming in at 6lbs 3 oz. and 18 inches long. She came via c-section on Dec 13.

We had a magnesium sulfate treatment before hand which is supposed to help to prevent cerebral palsy. It's a 12 hour IV treatment that is usually only done in cases of extreme prematurity. But, the doctor said even though it might only help our situation by only a small percentage if at all, the insurance would still pay for it, so we decided to go ahead and do it anyway. It can make you really sick I guess. But it just gave me some major hot flashes and made me very sleepy.

Our new little one has had a major bout with jaundice. (Who on this blog has NOT had to deal with jaundice?) She has been on the lights twice now. When we take her off, her levels go back up again. We've been grateful to have her at home with it all though. Especially at Christmas time. The doctor took her off the lights again yesterday and said we could send the lights back. But I'm holding onto them for another day or two just to be sure. :)

It would seem that with a 24 weeker turned "angel", a 26 weeker turned "miracle" and a 36 weeker turned "CP blessing" under my belt that a little jaundice would be nothing. To the contrary. I think it's all turned me into a paranoid mother. I'm not used to things 'going well'. This jaundice thing that just won't seem to go away has been draining emotionally, and the regular ups and downs of a newborn have exhausted me physically. One day ..... I'll sleep again. In the meantime, I'm hanging in there. And grateful grateful grateful for my little family and the blessings of all our adventures. Hope you all have had wonderful holidays!