Wednesday, November 24, 2010

Joshua's 2 year check-up

Poor Joshua remembers the doctor's office as he cried the whole time we were there and he didn't even have to get shots! The only times he was happy was when the dr sang to him (she asked if he likes singing and we said he did so she sang) and when we read to him. Anyway he is proportionate in all areas. He is 34 inches tall (54th percentile), 28lbs (51st percentile) and his head is 49 cm (72nd percentile).

We discussed with her all the concerns we had that Joshua's PT had brought up and pretty much as I thought the PT was trying to scare us. The dr seemed perplexed about his legs not growing because he wasn't on his feet enough and she saw no problems in his legs being turned in. So he is healthy, just behind developmentally. I even asked about him seeing an orthopedist and she didn't see any reason for it since she examined him and he looked fine. His ears are clearing up nicely from his ear infection. She said of course we should continue the therapies and work with him at home but agreed that we can't do it all the time. She was pleased to hear that he is now cruising more and can stand up for a few seconds at a time. Overall she was pleased with his progress.

Joshua is 2 years old! at

Sunday, November 21, 2010

Joshua's 2nd Birthday Party

I am going to try to write this without crying. I feel like yesterday was a culmination of the whole year and I try very hard to remember the good about it but it's hard. I had been waiting and planning this party for months and we had family and friends drive from as far as Raleigh to attend. On Friday Joshua was fine, perfect, himself. That night he didn't sleep very well, I was concerned already but hoping it was nothing. He woke up at 1 and 3 and then was up at 5 for the day. He was cranky and wouldn't eat breakfast, major uh-oh. He always eats breakfast, he loves to eat period so anytime he doesn't want to eat sends up a red flag for me. He got warm, had a borderline fever and was even crankier but we had people coming for his party at 11am, what could I do? We didn't do anything and let him nap from 10-11. He woke up and ate some lunch but was crankier than ever. He ate a piece of pizza. We all ate lunch and then walked up to the park and he was ok in the stroller and then at the park. We came back and tried to open presents but he wasn't having it. I tried to put him down for his nap but he wouldn't go so we drove around with him and he fell asleep in the car. That lasted a half an hour and then he was up crying. So we sent the guests home (it was about time for them to leave anyway) and took Joshua to urgent care. The mistake I made was taking my niece and mother with me and letting Jamie stay home, very bad idea that I regret now. We were at urgent care for 2 hours! The whole time Joshua was miserable from being tired and not feeling well. We sang to him and even got the channel changed on the tv to Nick Jr., that helped for a little but didn't last long. By the time we saw the dr she said his ears were red and he had a double ear infection, big surprise. He had no other symptoms other than being cranky and having a fever. We went home and before I could even pick up the medicine from the pharmacy he was asleep. He slept until 8 when he woke up we gave him his medicine, a bath and put him back to bed. He slept better that night although he was up once but when he woke up this morning we gave him his medicine, he at breakfast and has been fine all day. Why? Why me? Why us? Why him? When my niece left I finally broke down in tears that I had been holding in most of the day. It's not fair. I was so looking forward to this day for so long. Why couldn't it happen Friday or today? Why did it have to be the day of his party? He will have a small celebration at preschool on Tuesday, hopefully I can get some pics of that. I really don't know what to do, I have to try to get over it and try to remember the good about yesterday but it's hard.

Wednesday, November 10, 2010

E-mail to Joshua's PT

Today was Joshua's IFSP meeting his infamous PT actually attended. Well of course she did more than attend, she had him in his stander and then in the walker she lets us borrow. I went through all the same emotions I had almost a year ago at his evaluation and decided that rather than cry about it I could send her an e-mail and let her know how I feel. So I did just that and here it is.

First I want to say I really do appreciate all you have done for and with Joshua but you have to know that not every single one of the suggestions or recommendations you make are possible especially all the time and for the amount of time you want them to be done. I am his mother and I have to live with him and all of your suggestions. Just today I was brought back to the feelings I had when I took him to his physical therapy evaluation almost a year ago and it was very painful for me. I do not think he will like having a pressure suit at all, we have tried it with him and it has made no difference in fact he was worse during OT when it was done. I will try but I make no promises. The same goes for the stander. Of course I want him to walk and to improve but at what cost to me and him? His entire day cannot be therapy, he has to be allowed the same things that other children are allowed, free play time. I understand that you are concerned with his growth and development and appreciate it and of course so am I. Right now he loves speech therapy, it is the one therapy where he is allowed to just play and I will not ruin that for him. If he does not like being in the stander during that therapy and it becomes where he no longer enjoys it then I will not continue it. He has made improvements there and I want that to continue. It is just as important to me that he make improvements in speech as it is in other therapies. So I will try your suggestions and recommendations but in the end I will choose what is best for me and my son, I have to be able to sleep at night and not be miserable and I am right now going through the same emotions I had when he was first evaluated. I do not need to be reminded that he has a long road, of course I know that, but I don't need reminders. I also don't need to know that you thought he would have graduated by now and he hasn't, that hurts and I do not need to know that. I also am not ready to contact other families dealing with the same diagnosis as Joshua. If and when I am ready I will do it on my own. If you want more information about his diagnosis I suggest googling it but it was suggested to me by the genetic counselor that I not do that as it tends to be negative and I do not need any more negativity in my life. Also all children are different and I do not think that just because one child with the same diagnosis did something at one time does not mean Joshua will do the same. I am sorry but I think I have to tell you how I feel as I have to live with myself and Joshua and the suggestions and recommendations you make. I want him to enjoy being at preschool as well and do not think he would like being in his stander. He does pull up all the time and even stands alone for up to 20 seconds at time. You may not have seen him do that but he does it ALL THE TIME at home and even at preschool. Maybe that's not good enough for you but I have to celebrate the things he does and how far he has come and I think those are wonderful.

She came back by the house to install a piece on Joshua's walker and said it was great that he was standing for 20 seconds but that in 12 months (it's only been 10) he's only made 4 months of progress and I said that's better than none and she said if it wasn't for intense therapy he wouldn't have. Who does she think she is? She knows that it's 100% therapy that's gotten him to this point? No one knows that! She brought back by his shoes that go over his AFOs which have gotten too small for him for him to just wear the shoes without the inserts but if he can pull his feet out of smaller shoes that are his size how does she think these will stay on his feet when they're a size bigger? She said all we can do is try and they're just recommendations. Well they sure seem like more than that when she says them!

Saturday, November 6, 2010

Another Year

Since writing those letters to those two doctors I have felt better and think that I need to get it all out in the open, things that are still bothering me that have happened this past year. So far I've had a surprise apology and that has also made me feel better.

There's one thing left though that still bothers me that I feel like I need to get out. I was a member of a board online from the time I was pregnant with Joshua until December when I went to Joshua's physical therapy evaluation when I posted about it and didn't like the responses I got. I realize now I was never really a part of it and a lot of it is a popularity thing and I wasn't part of the popular group. I tried really hard to stay involved and I'm now wishing I had some of that time back to enjoy my time with Joshua as a baby more, it went by way too fast. I am glad I met some of the ladies on there that I am still in touch with and have been good friends to me. I am thinking now of ways I could have responded better to what was said but I don't think I could have back then, I think this past year and getting Joshua's diagnosis is what enables me to respond in a different way now.

Basically they didn't know what I was going through and had no way of knowing how it affected me. Part of what was said was based on the way the physical therapist treated and talked to me making me feel responsible for Joshua's delays. I know now that I was not responsible and feel worlds better about that. He has a condition he's had since conception, nothing we did caused or changed that. I am glad I didn't know ahead of time, I was able to enjoy my time with him in the beginning. Had we done prenatal testing who knows what our decision might have been. It will affect our decisions going forward and that's inevitable. I'm getting off topic here. Part of what was suggested was to suck it up and deal, cry about it and get over it. Having been through this past year I know that I would still be crying, it is not something you just get over. Other moms of special kids understand. That has been helpful to me, knowing other moms who have been in similar situations.

Also I have learned that I cannot do everything that his therapists recommend. There isn't enough time in the day and I have to find balance that works for me as this is our life and will be going forward for some time. Other moms of special kids would agree with me on this. I do know that I am doing the best I can, every day. The therapists don't always think about how what they say affects parents. I don't think they consider the time restraints or other therapies that he has and factor that in to our time. Of course I want what's best for him but that is for me to decide, not his therapists. They make recommendations but they don't know him like we do and no one knows whether it's the therapy or him making the improvements himself. Of course we will continue therapy with him but he has to have time to just play on his own without every second being therapy. Some therapy is play but some isn't and we can't expect him to work all the time.

Also something the neurologist said stuck with me, we can't change nature and while we don't know what the future does hold it's likely that he will get there at some point regardless. I also know my son better than anyone and if he isn't ready to learn something he just isn't going to do it. We have been trying to get him to walk for a long time and he's just not ready, period. When he wants to learn something he will pick it up right away. Just yesterday he learned to turn something on his pop up toy and it only took one time and he got it. However he does not want to stack blocks or pound pegs, period. His OT keeps working on those with him but he hates it. So basically I have some wisdom on this whole process now that I didn't have a year ago. I also know Joshua better and can predict his behavior better.

In less than 3 weeks Joshua will be 2 years old and I have no idea where this year went. We are so busy with therapies, preschool and appts. We did take two great vacations this year but somehow the year slipped by. I am trying harder to savor time before Joshua is another year older.

Tuesday, November 2, 2010

My favorite blog!

I am a reader of the Love That Max blog. Today's post totally hit the nail on the head for me! She totally gets it! Please read the post from today.