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Long time, no see...

We have had a very busy 8 months or so, but I think I have finally found some time to update this blog.

Baby # 5 came a little sooner than expected, only a week after Blake's sleep study. Her name is Alli Elizabeth and she was 7.0 lbs and 19 inches long, with a full head of hair. She is now a beautiful, happy and healthy 8 month old. She is crawling and just started pulling up on her knees, and even pulled to stand a couple times! I can't believe she has grown so fast. It is sad for me because she will be our last, and I will miss the baby stage like crazy. BUT someday when I am done with school maybe I can work with babies in some capacity.

Also, Blake's dad and I finally got married in August after 8 years together (we did it all backwards, but we did it.) It was just family and we were blessed to not only have my grandparents attend, but my grandpa was actually the officiant. So that was very special for us. And Blake looked very handsome in his little tie!

The results of Blake's sleep study showed that he has mild obstructive sleep apnea, which means he only has a couple episodes of interrupted breathing at night. It doesn't seem to affect his quality of sleep much, as he is always rested the next day, so as far as treatment I don't think there is much we need to do right now. He has a repeat study coming up in May and we will see if there has been any improvement.

He is doing well with everything else; the speech is still the hump that he can't seem to get over. Gross motor is awesome, fine motor has improved, he can eat pretty much anything (although he has been in quite the picky stage lately.) He started a special needs preschool in the fall and really seems to like it-he even takes the bus now! I really didn't want him to ride the bus at first but once Alli was here and it started to get cold we thought it may be for the better. He has adjusted so well to everything, and his teachers say he is happy and well behaved and nice to others in the classroom.

He seems to be getting more and more frustrated with his inability to communicate-he acts up and screeches a lot, which really drives us crazy. We try to put ourselves in his shoes and be patient, but sometimes it is really hard. I keep praying that speech will come and I hope that God will hear me, because I want so much for that little boy...for him to be happy, successful, accepted. He is always talking and singing, and can say some words so I know he will talk someday...the other day i told him to hurry up with his breakfast and he rolled his eyes and said "k...gosh." So maybe I should appreciate the lack of talking back for the time being.

We didn't end up going to the PTLS conference last June because of the baby and the wedding, but they did end up making a dvd that I can not wait to see. If they have another this year I would really like to go and have Blake meet all the other kids. I think it will be so special for him as he gets older to know he has friends all over the world that are just like him.

Alli is waking up- probably from her little teeth coming in, so I'm signing off for now. From now on I will update more often than once every 8 months.

Blake had his sleep study Thursday night. I wasn't sure if I should just do it or reschedule since it was so close to my due date, but I figured it would be easier to get it out of the way now than try to schedule around a newborn.

It went MUCH better than expected. I thought it was going to be a night full of crying, fighting, pulling off sensors, etc. He actually did amazingly well. We got settled in around 8 & put in a Barney movie to keep him distracted while the tech got him all wired up. He just sat there as she put them on his face, chest, head and chin. Then she wrapped it with a bandage to keep them on. He looked a little confused but really didn't seem to be bothered too much.

It wasn't until she put the rubber tube (that monitors breathing) in his nose that he got a little annoyed. He spent about the next hour pulling that out over and over and over. I put Barney in a second time, and the tech came back in to adjust everything and then laid him down and told him to go to sleep. And about 15 minutes later he did. I was expecting him to be really uncomfortable and wake up often during the night. He slept from 10:15 to 6, when they woke us up.

I, on the other hand, hardly got any sleep. I discovered during the study that he is a very loud breather when he sleeps on his back. I think he was also a little more restless than usual due to all the equipment that was attached to him. So every time he moved or made a sound I would wake up, then it would take a really long time to get back to sleep.

But I am just happy that he was able to get some sleep; it would have been much more stressful if he had been crying all night. He was a very big boy and then next morning we went down and got some pancakes. Then we went home and took a nice long nap.

I am expecting the results sometime next week-I will post again with the results.

Blake had his final Early On evaluation last week. This is what determines what level he is at developmentally and what placement will be best for him in the fall.



He will be going to a different school than we originally thought; our house is right on the border of two districts, and we are in the other school district even though it is farther away (makes no sense-I know). BUT this school is a lot newer and is state of the art-they have awesome facilities and it was designed by the teachers and therapists that work there, so he will be getting the best of the best.



He was tested by the school's social worker; he averaged at about an 18 month level, the lowest being 13 month for expressive speech due to his speech delay. Which I guess is okay considering the tests are standardized so either they can do something or they can't, according to the "rules". There were many things he has done at home that he just didn't do that day for whatever reason, but that doesn't count. If the tester doesn't see it it isn't a skill, you know? So if he had been tested in a more familiar environment or my someone who knew him (like one of his therapists) I think he would have scored higher.



I have to admit I was really upset when we got home, mainly because I expected it to be a little higher, and the 13 month level for speech just crushed me. Here he is almost 3 and he is on the same level as a baby for speech??? He has been saying more words at home and is ALWAYS having a conversation with someone, even if we can't understand it. He will cock his head and make little hand motions like he is really talking. So he is improving and he is trying, so I guess we just have to focus on that and have faith that with a little more help it will come. Like I said before, if the tester had seen how he "talks" at home, he probably would have scored a little higher.



I have to expect that he is going to score lower than his age range. Part of PTLS is having developmental delays-I understand that. But it still hits a nerve when he is compared to other kids his age. His new school will be every day, half days. So he will be getting much more help, and he will be in a class with other SN kids as well as typical kids. That is great because he won't feel alone and yet he will be able to learn from the "regular" kids.



I will update as I get more information. Please keep him in your thoughts and prayers. I'm sure him going to school will be much harder on me than it is on him!!

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.