Sunday, August 30, 2009
(He has no shirt because we ate pizza and I learned early that pizza and Travis' shirt are a bad combination. If I want it ever to be clean again.)
And Travis dropped his sippie cup on the baby toe of my other foot, the one I didn't break last month. I promise you, it's broken. I am not going to the doctor to find out though. I know the procedure now, and if my shoe fits (it kind of doesn't) I am going with it. We'll see how I feel tomorrow...
Thursday, August 27, 2009
We start our new insurance September 1 and we are having to make some tough decisions about how to spend our limited therapy dollars and our family's precious time. We are so amazingly blessed that we never were "cut off" from our PT benefits. I cannot explain it, except that God is always in control and He gives us the very best gifts. I cannot tell you how often I thank God for Melissa. She is so good to us, and she loves our kids too. Therapy can be drudgery sometimes, but I cannot explain how I feel like family at this place. They encourage me in awesome ways.
I am believing again that Justin will crawl, and sooner rather than later. And that he will talk. I videotaped the kids just playing a bit yesterday. Justin was jabbering and I wanted Miss Char to hear the cool sounds he makes. He even made the "M" sound, so I KNOW that "mama" is not far off.
Sometimes I am so entrenched in Justin's world that I forget what a typical child his age should be doing. A friend mentioned a few days ago that her son (Travis' age) is back in preschool so her daughter (2 mo. younger than Justin) is excited to have the riding toys all to herself while he is gone. I kind of stared dumbly at her. It didn't even register that she is walking and can actually RIDE on those kind of toys. Travis might get a rude awakening soon. And I don't even flinch when people ask how old Justin is and then ask if he can walk. I just say "no" and don't even explain. It just seems normal. I suppose that's odd, but also good. I just moved Justin into 18 month clothes, and as I pulled out some of Travis' old clothes for him I smiled thinking about memories I have of him I certain outfits. Some great pictures of Travis playing outside or showing me a toy. Justin's pictures will be very different. But already I have a picture in my mind's eye of him "crawling" in an outfit that I can also see a little Travis showing me a flower. And both of them have big, round bellies and gigantic grins. Brothers, but each their own person. They both give me warm fuzzies, if I let them. It's a choice every day. It's not always an easy choice, but it's mine to make. I have the power to be better because of my kids. That's what I want.
Wednesday, August 26, 2009
Then Miss Coleen and Justin got to work. This is a first for Justin: He is kneeling next to his play table (leaning on it) and playing with no help from us! Coleen is just holding the table so he doesn't push it away with his weight. He was able to hold himself without falling to either side or backwards! This is so good for him because he hates this position (tall kneeling, in PT/OT speak). He usually complains loudly, but today he lasted for about 3 minutes before realizing what he was doing.
Justin is making slow progress, but still progress. It helps when someone who hasn't seen him in a while sees him doing something that they haven't seen before. It gets me excited when someone else validates his progress. I was reading someone else's blog about working with her child with DS and sign language. They worked for over a year without any response, and then it's like someone flipped a switch and suddenly they couldn't teach her signs quickly enough. Those times feel so far and in between that it's so easy to get discouraged. I want to be able to look back and remember those highs during the lows. I pray that Randy remembers too, so we can support each other. Today was a good day! We're always praying for more.
Tuesday, August 25, 2009
Saturday, August 22, 2009
Thursday, August 20, 2009
This one is obvious: Travis enjoys wearing my shoes, and this time he added the purse, which as we all know, makes the outfit!
One of my friends has a fabulous quote by Erma Bombeck on the top of her blog: "When I stand before God at the end of my life, I would hope that I would not have a single bit of talent left, and could say, "I used everything you gave me." That reminds me of a sermon by a former preacher at our church. He said that he envisions arriving in heaven and God handing him a pamphlet and saying, "This is the pamphlet of the things you did for me." And then God will lead him into a huge room filled with books lining every wall from floor to ceiling. (SO my kind of room!) And then God says, " This is the library of things I had planned for you to do for me." I do not want that to be how I want my arrival in heaven to be, but I fear I may be headed that way if I continue to ask for the easy was out of every situation.
A book I recently read said something to the effect of, "Sometimes the hardest road to be on is the right one." God never said that following him would be easy. It certainly wasn't easy for the prophets and definitely not for Jesus or the disciples. So why do I keep asking God for that?
In all of my looking back at how Justin's life has been so far, and how God has walked with me, I know he has prepared me for each step of it. Now as I look forward I worry that the people and situations I encounter are preparing me for something else and already I find myself asking God to take it away. Justin is more prone to leukemia and celiac disease and when Justin was in the hospital recovering from surgery I had a conversation with a friend about not wanting Justin to have leukemia. He wasn't even over heart surgery and already I was telling God what I didn't want him to give our family! I feel as though I am balking at the preparation for the next "thing" and it's not even here yet!
I don't think it's wrong in any way to pray for good things. And I am certain that God wants me to share the deepest desires of my heart with him. But I fear that when all I want is the good and the avoidance of anything difficult that I was not truly walking the path that will bring God the most glory. I am afraid that God will actually give me what I want, even though it's not what he wants for me. I fear that I may pray away God's best and happily accept God's okay. I am putting limits on God. I know in my mind that God and I can do amazing things together. We already have! But if I don't want any bumps in my road, how can I say that I trust God and believe that his will is the very best?
I have been working red eye flight almost every month since Travis was born. I would leave for work at about 4 pm and get back home at about 7 am. On the outbound flight the passengers would be awake and we would serve dinner. On the way home, almost everyone would be asleep before we even took off. I loved those flights home! I could do all kinds of things that I couldn't do at home: read, write letters, hear myself think. It was glorious. Due to cutbacks, we aren't flying those flights anymore and now I have to work while it's light outside! So no more down time at work. I have been feeling like that was my time of preparation. And now I am in the light and I am expected to use the talents and the knowledge God has been pouring into me during that time.
I want to want to struggle with God through whatever he desires for me, rather than go along my merry way, blissfully ignorant to God's call on my life. Sometimes, that's where I have to start, praying to want to want. Sometimes it's even more "wants" than that! But if I truly desire to serve the God I love, I have to be all in, bumps, bruises, cuts and scrapes, if I expect the rewards and glory that He promises.
Wednesday, August 19, 2009
I am glad for less appointments and doctors, but that means more responsibility falls on me. Initially that worries me, because I am afraid I will miss something, but then I think about Travis and I am not worried about him. Not just because he can talk and tell me when he is sick, but because I am with him and I know him. That gives me assurance, and I am praying for that same assurance with Justin.
Tuesday, August 18, 2009
They talked about some of the general things about DS and then some of the new research that is up and coming in the field. I didn't realize that DS has only been understood to be a genetic disorder for 50 years, which they said is relatively recent. There is some research being done concerning proteins and the way our synapses send messages. The way Randy interpreted for me was that people with DS seem to have too much "sending" protein, so the "receivers" cannot respond quickly enough. Everything is still in testing phases, so nothing will be available quickly. That's the dumbed down version as I understand it. The doctor did a very good job speaking to us, until he got to that part and my mind just went numb. I am glad we got the DVD so that I can watch that part a few more times to understand it after the 5th or 6th time.
Also, the president of the DS Association spoke for a few minutes. She talked about how she found out about her son having DS 20 years ago. The doctor came in and said the usual, "We think your son has DS." (By that time they are fairly sure...) She said, "Well, fix him." He looked at her strangely and said that he couldn't, but that there were places that could take babies like him. Her husband just about leaped over the bed to get to him and declared that he was their son, and there was no way they were leaving the hospital without him. The doctor sent the social worker in with some information for them, and the first book they read about DS had a picture of a boy on the front, behind bars in an institution. She went home and cried for 30 days. And then she pulled herself together and started raising her son. She is a fabulous mother too, and in some ways she is the mother of all of us. She has worked so hard to make life better for all of our children.
We had a good group there, and so many babies! It was probably the liveliest "Evening with Genetics" they have ever had. I am just guessing here, but I think next month's topic: "Understanding the variability in Noonan, Cardio-Facio-Cutaneous and Costello syndromes" won't get quite as big of a response!
Saturday, August 15, 2009
We did meet someone who has a daughter with Phelin-McDermid syndrome, which is a missing portion of the 22nd chromosome. She was just diagnosed this June and she is 5 years old. Her mother said that she functions on the level of an 18 month-old. She has been to 5 different doctors who couldn't determine a diagnosis, and finally a school therapist suggested that she visit a geneticist. So while she has been dealing with this for several years, this is just the beginning of her understanding what she and her husband are facing. There are only about 400 documented cases in the world, so she is feeling very isolated. Since we have had several people with other genetic disorders come to the DS support groups, I encouraged her to come to our meetings. We have so much in common; I hope we can encourage each other.
Friday, August 14, 2009
Thursday, August 13, 2009
And let me tell you, I got what I expected! He apparently has a congenital condition, not related to DS called myelinated nerve fibers in his left eye. It is usually asymptomatic, but it can cause extreme near-sightedness or crossing of the eyes. There is nothing that fixes it, but he will need to be observed to watch for any decline. If it does cause symptoms, they can be addressed at that time. So this is another doctor we will have to visit in 6 months, just for a check-up. Justin really was a trooper, getting his eyes dilated and then having to sit through swimming lessons in the sun!
On the Travis front, he is excelling in swimming lessons. He managed to jump off the edge and get back to the wall with no help from the teacher. A first for him! His one major issue is still breathing. He can only swim as far as he can hold his breath. He doesn't lift his head up, and if he does, he stops kicking and using his arms, causing him to sink. The teacher taps on his head to remind him to breathe, but still, no big breakthroughs.
Monday, August 10, 2009
So I was preparing dinner, washing clothes, feeding Justin, oh yes, and watering the lawn. Travis was unloading the plastics cabinet for the first time in...a year maybe? He was asking me questions and I was giving the usually response, "Uh-huh, sure..." and not really listening. When Justin finally had calmed down, dinner was coming along, the loads of laundry had been changed, the lawn was getting watered I turned around and Travis was playing in the refrigerator and freezer! He had them both opened and he was mixing "juice" in the plastic containers and then putting them in the refrigerator or freezer to cool. Every inch was crammed with empty containers. I racked by brain and finally I found it: " Mom, can I play in the refrigerator?" "Uh-huh, sure..."
I seriously said that??
Saturday, August 8, 2009
You can see in the pictures that already Justin is forming the "o" shape with his mouth, although he isn't sucking yet. Also, we left the top on the bottle so we can pull the tubing/straw out and close it for when we need to pack food to go out. I really would like for Justin to try to lift the cup himself. As you can see, he is perfectly content allowing us to lift and hold the cup for him to drink.
Wednesday, August 5, 2009
And he continues to awe Miss Char. She said she would like to have 25 Justins she is so proud of his progress. She watched me "talking" with Justin during therapy and she was so pleased with his communication ability! He has started making the "O" shape with his mouth (like for sucking) and babbling the "E" sound which is tighter than the "A" sound, which is very loose and easy to make. She thinks I would make a good speech therapist when I "grow up". Hmmm....
We had our first session with our new Keep Pace therapist (the new Miss Lucy I keep telling Travis...) Her name is Coleen and it's going to take a while for her to catch up with Justin I think. She was so proud of the things she was able to get him to do, things he's been doing for a while. It will definitely take Justin some time to warm up to her. I am grateful for some new techniques. Justin doesn't like showing off, so she will be slow in learning his ability. He sure can stiffen those legs! She tried to bend them to get him to crawl and he wasn't having ANY of that! He kept crying and looking for me to save him. That is the very hardest look to see on your child. I want to reach out and cuddle him close to me and tell him that I will never allow that mean woman to touch him ever again. And yet, I know that it's best for him to continue to struggle. I wonder if that's how God sees me just about every day. When I whine to him about how hard something is, do you think he has that same pull of wanting to save me, and yet knowing that he must leave me go through the pain to grow and mature? I wonder sometimes.