Wow again long time no update. Sorry. Andrew has been doing wonderful. He graduated out of feeding therapy and music got cancelled due to budget cuts. We have his review coming up in a few weeks. It is hard to beleive that it has been two years since we started with the regional center. It has been a long wonderful, stressfull two years. I have seen so much improvement in him. We will be having our evaluation with the school distrcit at that time too. They take over Andrews care at the age of three ( which is in 9 weeks). We are going to try and get him into a preschool thru the state. They will continue with his speech and O.T. I wish i can do more updating but it is after midnight and I am tired.

Weighted blankets

So after talking to his OT we decided to try out a weighted blanket. She had a sample one in the office so we let him get used to having it and he did really well with it. He sat longer and focused more. So we have it at home now and we are going to try it out for a week. They run about $130.00 so we want to make sure it works for him before we spend the money. Now if we can just keep him in his crib to use it. The little booger has figured out how to climb out. So I have rearranged the room once again to make it so he has NOTHING near his crib. Just a little more longer. I am not ready for him to be out of it just yet!!

I want to apologize for not updating sooner. Summer came and we have been on the go every day. Trying to keep the kids occupied and not beating each other up. It was a chore. To summarize up our summer all three kids were in gymnastics, Owen and Audrey were in T-ball and Owen made the all-star team. Owen and Audrey have started soccer. Audrey was in pre-school and today Owen started second grade. Also we go to cub scouts once a week. I know i am missing a bunch of things. On top of all that we were still in therapy five time a week with Andrew. Phew I am getting tired thinking about it again! The kids Grandma has moved in with us and has been a big help with keeping Owen and Audrey busy while I was with Andrew.

On to Andrew, the reason for this blog. He had been doing WONDERFUL!! He has been improving SO MUCH over this last month. We are loosing music therapy due to the states budget cuts so we will be down to four a week starting next week. In ID his attention has come so far. We went from not sitting and holding his attention at all to picking one or two toys and sticking with it for the whole hour. He even pulls out his table and chair when she comes. Speech, has come along also. His understanding language is outstanding but his expressive is still lagging. He is at about 18 months for expressive and he is 30 months now. But we see improvements all the time. He is still using alot of his sighs to help us understand him. OT has caught him up with his fine motor skill. Is has reached and exceeded those skills. We are now working on his attention and sensory issues. He loves to be touched and being in the bins of beans or bird seeds calms him. So we are desensitizing him that way. Music, I am sad to be leaving but the budget cuts are making it so. He LOVED music therapy.He gets very happy when she is here. Lastly is feeding. along with speech this is still another big delay. Even tho he is still delayed he has improved tremendously. He is still pocketing some food and just mushing it around but not as much. We are starting to see a true chewing pattern. His gagging and choking are almost all but gone.

I was looking at some pictures of him from this time last year and almost stat crying because of how he looked. (see below)

Now look at him.

Thank you every one for your support over this last year.

Good and Bad news

So we will start with the bad. I am 99% sure his reflux is back. He has been avoiding food, holding it in his mouth and not swallowing and when he does get it down most of the time shortly after he will throw it up. So we are waiting for our referral from Kaiser to see their GI Dr.  We also have a appointment with ENT to get his tonsils and adenoids checked. He is a mouth  breather and a very loud snorer. Also we are getting a second opinion on his tongue tie. Both his feeding therapist and his speech therapist believe it would benefit him to have it clipped now and not later.

So now the good. At speech today he started to put two words together!!!! Yeah!!! His one words have increased to about 35-45 words that mostly I can understand depending on the way he says them. But today he said  "bebe baba" (baby bottle), "bebe ni-ni" (baby night night) and "mama ba" (grandma bath). When he did that his therapist and I both stopped and looked at each other like, did he just do that? So we are making progress. 

Here is a picture of him from the other day. Enjoy.

Wow it has been a while since I last posted a update on Andrew. So Sorry!!! We have been VERY busy with all the kids. Andrew is doing WONDERFUL!! He is improving everyday. His understanding is incredible. I am finding his biggest delay is still in his expressive communication.  His sign language is improving everyday. He had a new genetics appointment with Kaiser last week. I feel it went really well. This new Dr. isn't as sure as the other Dr. that he has Coffin-Lowry. He wouldn't tell me what he thought it was but he was going to do some research. He also had another audiology appointment and so far it was good. He was too upset to finish the test so we rescheduled it. That is is for now I will update more with pictures later.

 

Still Sick

So I took Andrew back to the Dr.'s today. I didn't like the way he was breathing. This new Dr agreed that he was fighting to breath and said to give him the inhaler 2 x's every hour for 4 hours. She also informed me that he has a mild ear infection in his right ear and proceeded to get a prescription for antibiotics. Oh I hope that his tummy is some what better that he can handle them this time. He is sleeping now and I am enjoying the cuddle time with him I just hope he gets better soon.

 

My baby is sick.....

Thanks to beautiful Miss. Audrey, Andrew is now sick. Audrey brought home croup last week and went to the ER because she was having trouble breathing. I got her all better (somewhat) and now Andrew is sick. He has had a fever on and off for three days now with a really runny nose and a cough. I am kind of enjoying it because he want to cuddle with me when he doesn't feel good. On a good day I have to fight him for a hug. I hope he gets better soon......

Happy Birthday Andrew

Today my baby turned two. My birthday wish for you dear Andrew is to continue to be strong. We all love you very much and we will not stop helping you to be the best you can be. You are my inspiration. You have shown me how patient and understanding I can be. You are my miracle and I love you with all my heart.  

Urology

Andrew had his one year follow up appointment with the Urology clinic the other day. This was to follow up on the kidney reflux from birth. The kidney had healed it's self by his first birthday and at that time his ureters were still enlarged. So he had a ultra sound and every thing was with in normal range. We talked with the doctor and we are going to do yearly ultrasounds and visits. They think one more all clear next year and we will be done with Urology. So besides the fact we had to wait two hours for hte doctor I guess it was worth the wait to hear everything is good.

Happy New Year.

I hope every one had a Happy New Year!! We are excited for all the things to come here in our house. Andrew will be turning 2, Audrey will be 4 and Owen is approaching 7. Yikes! We are looking forward to Owen and Audrey starting T-Ball in March and Andrew to continue with all of his therapies. We have officially be in therapy for a year now. We had his one year review in December and we are continuing with all current services. He had a evaluation with his infant teacher and here are some of her results

Development area        Level in May                              Level in Dec


Personal Social   12 mo. age                12-15 age


Cognition 6-9 with some 12 12-15 age

Communication 6-9 9-12 with some 15


Fine Motor 6-9 with some 12 12-15


Gross Motor 9-12 with some 15 15-18 with some 18-21

We are seeing lots of improvements and look forward to seeing more.

Merry Christmas

Merry Christmas.

Thank you everyone 

for your support this

last year.

E.R. Visit

So Andrew and I had an eventful evening last night. we went with grandma to Wal-Mart to get my cards printed off and when we got home she left and two seconds later Andrew took off to look out the front window and turn the lights on. Well that didn't go according to his plan. He tripped and split his eyebrow open. So travis calls my mom back and she drives us to the E.R. He stayed behind to get the other kids ready for bed. Well one and a half hours and one internal and three external stitches later we are home. He did really good. Here are a couple pictures from my cell phone while we were there.

Here is the "damage"

Waiting for it to numb up.

And the stitches.

He goes Monday the 22nd to get them out.

Hearing Eval.

So Andrew had his hearing evaluated last week. The technician said he was with in normal range for hearing. A few days later I got the report and I had no idea how to read the graphs and all the numbers that were on the form. So I showed his speech therapist. She said that normal hearing is in the  -10 to 20, Andrew cam in right at 20 with at 4000 hertz he came in at 25. So depending on who you ask what web site you look at he is either just fine or has mild hearing loss to the higher pitched sounds.  So, yes he is with in normal range on hearing but one more step down he will be considered mild hearing loss.

Speech eval.

So yesterday we had his speech evaluation done. Here is the short version. After two hours of evaluating she came to the conclusion of yes he need speech therapy. I could have told her that. As for his delays in his understanding of speech he is at a 12-15 month level which is consistent with his other levels. His expressive communication was at a bigger level of delay. It was at a 9-12 level. I was a little surprised by that number but not much. Like I said I knew there was a problem. So we are now adding in another therapy once a week (I think). So the grand total is 4 therapies one time a week and one once a month thru January and then we drop the once a month one.  Again I hope you all have a wonderful Thanksgiving.

Sorry it has been a while for an update. We have been REALLY busy. We are coming to our one year anniversary with therapy. In this year I have seen tremendous improvement in Andrew. The biggest being in his physical abilities. When we started Andrew was 11 months. He JUST learned how to crawl and sit on his own. He also didn't have the reflex to catch himself if he fell. Now he is doing so great. We have stopped with the leg braces and now use very supportive shoes. He can walk with confidence and he can run. Boy can he ever run. He had a quick evaluation last week and he will have his formal one for P/T next month but she said that he was at a 20 month level and he is 22 months old.

We did get the call for speech and he will be evaluated tomorrow for that. 

He had his eyes checked again and for sure he will need glasses in a year or two. He also went to the dentist. He has no cavities but he did manage to grind the enamel off two of his upper teeth. I have no idea how that happened. 

Next week we are going for our 6 month (a little late) follow up with the audiologist. 

I hope you all have a happy Thanksgiving. We have a lot to be thankful for.

On a not so good news update

The poor boy has the poops so bad again that it has "burnt" the skin off his tushie and his cheeks are bleeding again. He cries so hard when I change him it is sad. He is pooping at least once a hour and just keeps it from healing. I hope he stops pooping soon. Well not all the way we don't want to go thru what we went thru this summer with him not pooping at all.

P/T

Andrew is doing SO well in P/T we are now going to once a month for November, December and January. In January will be his last time. He has met his P/T goals. As for his leg braces we are going to change them out for new ones. The ones he has now are for low tone and pronation. His low tone is better so he doesn't need them so high up. We will be getting some that go to his ankle for the pronation. This is good news!!!!

Research

I found a doctor in Georgia who is doing research on this gene and others. He is looking at all of Andrew's tests and the next time Andrew gets blood drawn we are going to send him some to do work on. He is studying different variations on the gene. In the process of getting all the information together for him we found out that not all of the testing was completed. The gene specific test was to be done in two tiers. If the first tier was negative (which it was) then the second more in-depth test was to be done. Well, it wasn't. So the genetic councilor was going to call the lab and find out why it wasn't done and have it started. So we are still "technically" not out of the woods  on the gene conformation yet. 

Wonderful news!!

 I have some wonderful news!!! Andrew broke 20 pounds. Not only did he break the 20 pound mark he surpassed it. At his GI app. last week he weighted in at 20 lbs and 10 oz. We were absolutely thrilled to see that. He has been fighting to get this weight on since May. He was almost 20 lbs in May and then he got sick and spent a few days in the hospital. He went down to 18.5. It has taken 4 months to put this weight back on. So we don't have to go back to see the GI until his 2nd birthday. That makes me SO happy. 

With his diagnosis I do need to take him back to the dentist, audiologist and eye doctor just to get everything rechecked. 

Diagnosis

So, two weeks ago we went and saw the geneticist for our follow up appointment. Deep down I knew what she was going to say. I had prepared myself for it. But after we left and on the way home it hit me. My son was just diagnosed with Coffin-Lowry Syndrome. According to everything I have read he will be severely retarded. I was numb for a day or two and then I contacted the CLS parent support group and introduced myself and Andrew to the creator of the group. After a few e-mail back and forth she thinks that he was miss-diagnosed. She said that yes he has many of the features and attributes of the syndrome he doesn't have the "key" ones.  I am trying not to get my hopes up too much that she is right. We are raised to trust and believe out doctors, but she has a son with CLS and had been helping other families for YEARS and knows quit a bit about it. I am so confused. I love Andrew no matter what the diagnosis is.  He is my baby boy.