Blake is doing great!

He is eating everything in sight. He has graduated to small pieces of chicken, and we switched him to a regular sippy cup with a hard spout, which he has never been able to drink out of before. He got the hang of it right away, and the fact that he can suck hard enough to get something out means his oral tone has greatly improved.

He has been released from his private feeding therapy because he has made so much progress in that area, but he still gets group therapy through Early On 2 x a week. When group ends for the summer we may bring him back so he is getting something, depending on what his swallow study says in May. Hopefully it will show improvement this time and we will be able to wean him off the thickener we use for liquids.

He will age-out of Early On when he turns 3, so in the fall will be starting a special needs preschool. He is so tiny- I can't imagine him going to "real" school! They like for them to ride the bus so they can get to used to what school is like, but I don't think I will be able to bring myself to put him on a bus just yet. Maybe next year...

As far as the upcoming swallow study, I don't see how he could not show improvement and be eating the way that he is. I'm so worried that we are gonna get our hopes up again and find he is still aspirating, and take one giant step backwards in terms of his feeding.

Gross motor wise he is awesome-a little too awesome. Last night I was in the middle of getting him out of bed while making dinner and trying to keep the other kids somewhat under control. I brought him downstairs and put up the gates-except the gate to the stairs. Then I resumed my post in the kitchen. About 10 minutes later I happened to walk past the stairs and saw a flash up at the top. "Tyler," I called. "What are you doing?" Then I realized it wasn't Tyler. It was my ninja toddler, who, seeing an opportunity to get up the forbidden stairs, had soundlessly crept up there when no one was paying attention. I don't know what he had been doing or for how long, but he seemed to be having a great time.

He is "talking" more and more every day, and the other day picked up Nick's shoes and said "shoe" as he threw them into the kitchen (like he does with mostly anything that is in the living room-towards the end of the day you can't even walk through the doorway). Then yesterday he said shirt! Of course, the first time he says it is usually the clearest, then when I try to prove to someone that he can say it it's not too convincing. But I know he can say it, so that's all that matters. Also, the latest sign I have been working on is thank you. Last night he kept giving me cars, and finally tapped me on the arm and when I looked did the sign for thank you, all by himself! He has never done that before without me doing it first. He was telling me to say thank you for sharing his cars! That was really great. When they sign a word without being prompted, that's when you know they really got it. He is such a smart kid, and every day he does something that makes me proud.

Lastly, (I know-this is what happens when you only have time to update every couple weeks) we had our visit with the pulmonologist on Monday. This is the secon to the last specialist on our list of things to have checked out. Woo hoo! anyway, he said based on the fact that he sleeps so much, the fact that he has low muscle tone, and has had difficulty swallowing, he wants to send us for sleep study to check for apnea or any other sleep disorders. I have always had a gut feeling that this would be the one area where he has something going on, so we will at least know for sure. Treatment would depend on the severity of the disorder-it could be anything from medication to surgery to a cpap machine ( a mask they wear at night to help them breathe--I'd like to see them try to get my mischievous 2 year old wear that.)

Also, sleep disorders are very common among not just PTLS kids, but kids with various other syndromes as well. So we will keep our fingers crossed. It is scheduled for May 14, which is about 2 weeks before I have our new baby. NOT looking forward to spending the night at the hospital 9 months pregnant, up half the night trying to keep busy little hands from pulling hundreds of wires off his body. But we'll see how it goes, and when this is over we will have a much needed break from the battery of tests we have been through.

Anywho, time to get another kid off to school. I will update as new things happen.

Blake's eye appt. went pretty well. She found no major problems, although did see some mild peripheral (cortical) cataracts. They are not interfering with his vision at this point, so we will recheck again in 6 months to see if they are progressing.

In children they are usually the result of eye trauma or congenital. I have also heard that cataracts are fairly common with genetic syndromes, although not enough is known about PTLS at this point to determine if they are related to his condition or not.

The good news is IF they progress as he gets older there are a couple different options he has as far as surgery goes. Cataract surgery is one of the most commonly performed surgeries and has a very high success rate. So we will keep an eye on it (no pun intended) and pray that it doesn't give him any problems.

Overall all he handled the exam like a champ, from the stinging eye drops to holding still for the doctor, and got some very cool sunglasses to wear home.

As you may have noticed I have been MIA for quite some time. We have been SO busy with the holidays and school parties and a couple of strange maladies that I hope to never deal with again. BUT now everyone is healthy and things are finally back to normal after the stress of the last couple months.

All of the kids are doing well. Tyler got a great report from his kindergarten teacher; doing well academically, is well-behaved and kind to others. Savannah is enjoying pre-school, up and dressed and in a hurry to get there every day. She was actually upset when they had to go on Christmas break! Paige I am especially proud of this year. She is doing amazingly well in 6th grade, getting all A's and B's (even in science & math, where we had to work to get a C). She is in band and choir and enjoys both. I have gotten some very positive feedback from her teacher regarding her writing skills. She has a great talent in that area, and also in art. I am really surprised at that one considering the fact that I don't have an artistic bone in my body, but she is REALLY good. She drew some cartoonish animals recently that were so good I was convinced she had traced them. I actually had her draw another while I watched, and sure enough she did it just by looking at a picture in a book. I had never considered art as a career for her but she just may have a future in it.

That brings us to Blakie. That little guy is doing so well. A while back he started using the word 'mama' in a functional way-he would always say it, but not to communicate with me. He was eating one day and I was reading, and he said "mama". I looked and he signed to me that he was all done. He actually used the word to get my attention so he could tell me something! I couldn't believe it. He has since been using it on a regular basis to tell me things. He also says 'yeah' all the time (even when he shouldn't, but he says it so enthusiastically that it's adorable), and FINALLY started saying 'dada', which I think melted Nick's heart when he heard it. He says other things like doggie, what's that, bye bye, etc. Some are more clear than others but since we are always with him we can understand. He even got a note sent home from the speech therapist today saying how pleased she was with his vocalizing, and that he was imitating more words than he used to. That was so nice to hear. Speech is his biggest obstacle and we have waited a long time for him to make progress in that area.

He also had a check up last week and that was also great news. He has jumped to the 50th percentile for height and is almost at the 50th for weight. I'm positive this growth spurt can be attributed to his gains in the feeding area. He is eating basically anything that isn't really hard or crunchy, and still has trouble with bread and meat, but that will come. He has learned to jump with both feet off the ground, run, and will try to do anything his older siblings do. He has his opthamology appt on Jan. 20 to check for any eye conditions related to the PTLS. I am hopeful that this will come back normal like all the other tests we have had so far.

I think that is pretty much it. I am VERY blessed to have such amazing kids, and their dad who they adore and who adores them. I will try to find the time to post updates more often, and will definitely post the results of the optho exam.

I hope everyone has a great new year. I certainly am looking forward to the progress that will be made this year.

I had Blake's parent teacher conferences recently. We were very happy to hear he has improved in all areas! From January to September of this year his fine motor score went from 37.9% to 71.2% (a HUGE jump!) gross motor went from 62.7 to 78.1, cognitive went from 38.8 to 50, social-communication went from 29.3 to 48.9, and social went from 68 to 80. They are not expected to be at or near 100% until they are three, so we have some time to work on things. I don't expect him to get there for everything (for example social-communication or cognitive) mainly because with his speech delay it will always be hard for him to communicate or for us to be sure of exactly how much he understands. But I know he will do great in all other areas.

We also talked about special needs preschool. He will age-out of the Early On program when he turns 3, so in the fall he will be going to "real" school. There are a few different preschool programs available and they will test him again at the end of the year to determine which one fits him best.

I can't believe how much has happened in the past 1 1/2 years! It seems like yesterday he was 9 months old and his doctor was telling me something wasn't right and my world was crumbling around me...something was wrong with my baby and nobody knew what. And then all the therapy and tests, and then finally a diagnosis, an actual answer. I was so scared for him. And now he'll be going to preschool in the fall! My little weak baby who had to go to therapy for months to learn how to even stand up is now walking and running and eating-and soon going to school. Words can't describe how that makes me feel. He is doing so well. One year ago today I never would have thought he would have come this far. There is no limit to what he can do. He is, in a word, amazing. I am so lucky to be his mom.

Yesterday I noticed Blake had been awfully quiet.

I went looking and found him in the bathroom, covered in toilet water. Then I noticed he had quite the collection IN the toilet. This is what he put in there...
1. My shampoo
2. His shampoo
3. My facewash
4. Nick's deodorant
5. Body wash
6. Chapstick
7. 2 razors, and...
8. A calculator. A calculator?!

Then I thought to myself, I am so lucky. That was such a "normal" 2 year old thing to do. We are so fortunate that he is able to do the naughty things that little kids are supposed to do. Every day he seems less and less impaired and more and more capable. Every day he surprises us, in one way or another!

Great news from Blake's dr. His kidneys are fine. So far all three tests we've had have come back normal! I am hopeful that he will be one of the few kids that don't have any health issues related to PTLS.

He was so funny last night. We had the music on and he was walking around the house dancing, but kind of half-dancing and half-walking. I told his therapists once sometimes he reminds me of that episode of Seinfeld where Elaine thinks she can dance, but just looks like she's having some sort of fit? LOL. No really, he actually does have rhythm; he's just not able to coordinate all his movements yet. I will not be surprised if he grows up to be a break dancer or something. He is a dancing machine.

Blake had his renal ultrasound yesterday. We were there early and they got us in right away. It only took about 15 minutes. Blakie was good during the first part because he got to lay on his tummy facing me, but when he had to lay on his back he cried and cried and wiggled until they were done. Good thing it was a short test. We will get results in 2-5 days. I am optimistic that this test will come back normal and we will be 3 for 3 (heart, hearing and kidneys.) Our next appt. is opthalmology in January, so we will have a much needed break until then.

Other than that he is doing great. He is getting used to his SMO's (orthotics) although we need to get them on quickly or he gets irritated. We are working on climbing in physical therapy and he is doing a lot better with steps, curbs, etc. We have been having trouble with insurance so he has not had any feeding therapy for the past few months, but he is still doing well with his eating. Although he is still very delayed with speech he has started saying 'yeah'. Every time we ask him something the answer is "YEAH!" It's really cute. We are still fighting to get him speech therapy. Even though this is his biggest obstacle and therapy is desperately needed, it is one of those things that are rarely covered. The sad reality is that he may have to wait until he is 3 and in the school system before he gets any speech.

A friend came in to work tonight with her daughter, who is 5 days older than Blake. She was speaking full sentences and telling me how big she was and eating grilled chicken. It was really hard for me to see. I am so used to Blake's delays that it has become our new "normal". Just when I start to think that all 2 year olds are where Blake is developmentally, I'll see a typical child running or eating steak or singing, and it is like someone slapped me. I think, why us? Why our Blakie? It's not fair... And then I feel guilty for feeling like that. Blake has come so far and I am so proud of him, but he has so far to go. Why does it have to be so hard for him and so easy for others?

Until tonight I thought that I had accepted all this; that I was at peace with this new "normal." I guess it will take a lot longer than I thought it would for my heart to heal. I'm going to go tuck him in now, and rub his head like I always do, and thank God that we have him. And tomorrow when he gets up he'll smile at me and make me feel better, like he always does.