Blake had a repeat swallow study today and passed with flying colors!  There was no sign of food or liquid going in to the lungs, so we officially no longer need to thicken his liquids.  So very happy & thankful  that after a very long journey we can finally put his feeding issues behind us.  Yay!

It finally happened....poo poo on the potty!  Way to go Blake!  He  gets a blow pop for that.

Blake had his second heart study last week.  It went much better this time.  He was such a big boy and was very cooperative, laying so still he almost fell asleep during the echo.  The 1st one we had done (when he was 2) was horrible--he screamed the whole time and I had to hold him down for the whole thing.

Everything looks good so far-he has a stills murmur, which is fairly common (up to 30% of kids have one, including my TD son) and has nothing to do with ptls.  The cardiologist said that if the aortic root were to dilate it most likely would happen between 8-13 years of age, which makes sense because that is when they hit their growth spurt.  So we will check back in 3 years.

He also has started at a new preschool because we moved in to a different school district, and due to ECSE rules we can not bring him to an out-of-district school.  I was pretty upset about that one.  I loved his last school and teachers and thought they had a great program.  I was really worried that he would be expecting to see the same faces and the same building from last year and was going to be totally confused and scared by the change.

He was a little unsure his first day, but when i picked him up he had a big smile and when I asked if he had fun he said "yeah!" His teacher is very nice and has 22 years of experience, plus her background is in speech pathology so her program is very language focused.  With his biggest challenge being the speech delay i think this will be a huge benefit for him.  Also the co-teacher specializes in ASD (autism spectrum disorders); a large percentage of ptls kids end up somewhere on the autism spectrum, so if this is the case for Blake we will have someone with him daily who is very knowledgeable in that area, too.

The Jenison school district has a reputation for their great special education program, and i have heard nothing but good things so i hope that it will work out...I still wish we could have kept him at his old school but I guess all that matters is that he is happy and getting whatever help he needs. 

Potty training has been going well. He has peed on the potty pretty much every day now. Still waiting for something a little more exciting to happen in there if you know what I mean. I don't even have to give him a reward most of the time; he is just happy to do the potty dance. I'm sure it will take a while but we are off to a good start.

OMG! Blake just peed on the potty. It was an accident at first, but once he got the hang of it he just kept going. This has definitely given me new motivation to keep up on the potty visits...Before it was like, what's the point? He won't do anything anyway. But now that he knows what we want him to do and how to make himself do it on purpose, hopefully he get it fairly quickly. Yay for Blake! I guess mom has to make a trip to the store for things to put in his treat bucket...

Blake has been doing really great the last couple of days! He has been throwing out random words all over the place and has been eating really well. He has been eating the sandwiches I make him for lunch and he has been eating his dinner without the usual struggle.

He is saying juice and cheese and thank you and many more words on a regular basis. Just today he took a bath and after he got out he said he was "keen"-it took me a minute to realize he was saying clean.

We are beyond excited for this sudden progress with his speech...we know that most of the kids with ptls start talking around 4 or 5 so we have been waiting for it to happen. We can not wait to see the progress he will make this school year.

Ahhh, summer is here and the kids are driving me nuts already. Blake did a great job in his first year of preschool! His teachers said he behaves well and does great with the daily activities and routines. His speech is slowly but continuously improving and he is attempting to communicate more than at the beginning of the year. Just the other day I got back from the store and he said "mama home!"

He also has finally started eating bread, which he wouldn't touch before. That gives me so many more options for lunch-up until now it was yogurt and fruit or chicken patties. I have a feeling the sudden improvement in speech and eating are related, most likely the muscle tone in his mouth is improving. He had a repeat sleep study in May and this time he had no sleep apnea, just some snoring. So that is a great improvement! Once again possibly related to muscle tone?

His sleep study went much more smoothly this time. He was really good and when it was time for bed I laid with his for about 20 minutes or so. He watched the pulse ox monitor on his finger glow in the dark for a while and then he just went to sleep. And he slept all night. I thought I would sleep really well there. I didn't. I was up most of the night and was very happy when it was finally over and we could go home.

At home he has been quite the handful lately, pretty much needing constant supervision unless he is really into a movie. He is always picking on Alli; laying on her, kicking her, pulling her hair, pushing her. It has gotten to the point where she will scream when he even comes near her. And the other kids are targets, too. Savannah seems to be his second favorite to terrorize. I don't know if it is jealousy, lack of routine, his age, or behavioral issues associated with PTLS. The fact that he doesn't act like this at school tells me it has less to do with PTLS and more to do with the other things.

He had his 4th birthday last month so we have decided to use the summer to attempt potty training. He loves to sit on the potty; he will go and get his little stool and put his potty seat on the toilet. Then when he's done sitting he will get down and wash his hands and say "I pee! I poo!" even though he hasn't done anything yet. He will tell me he peed after he does it in his diaper, so I guess that's a start. I am trying to mentally prepare myself for the fact that it will most likely take forever, just like everything else he's learned has. You would think that I would be really good at being patient by now. I'm not.

So Blake's speech has been his biggest challenge lately. Then just when I think it will never come it improves a little.

He started saying "cold" the other day; come to find out they had been learning about hot and cold in school and he took what he learned and started using it at home.

As if that isn't exciting enough, the other day I asked him what he did at school like I always do. He never answers me, but when I asked him he started imitating animals. When I read his What We Did Today Paper, sure enough it said they went over all the zoo phonics animals and the noises they make.

Then today, today was the biggie. He picked up Alli's bottle, brought it to me and said "here your baba." HERE YOUR BABA?!?! It came out more like "he ya baba" but it was perfectly clear what he said. He says words here and there but he has never put a 3 word sentence together. I've always had to prompt him to repeat a sentence. That is amazing and such a big deal. I am so excited and am hopeful his language development will continue to improve.

Hope you had a happy and blessed Easter--I know ours was!

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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.