It's so exciting to be able to go to therapy and watch Liam pass goals! He has been consistently passing his speech therapy goals lately and he just had a re-eval for OT and he had one of his best days ever! He's finally getting the hang of using his arms in front of him. He will activate switches and toys in midline now. It's hard for him because of his motor control and because of his tight pecs, but he's doing it. He was fascinated with a ball at therapy last week and he kept turning it on over and over.
Liam's made a lot of changes over the last 6 months since we started at our new therapy location. When he was re-evaled last week, they asked me what I thought has made the most impact on Liam.
First and foremost, I believe Liam has made so many changes because of his last round of HBOT. He completed 40 dives in May and it was an instant change in Liam's arm skills. He first started giving high fives before we even left HBOT. And we have seen a great progression since then.
Second would be kinesio-taping. Liam started making a difference in his rolling when we started taping his pecs. He finally started leading his rolling with his arms instead of dragging them behind him. And we have watched him gain some strength in his back since taping too.
If I could do anything to help Liam get better that is remotely financially possible, it would be another round of 40 dives of HBOT. Our PT asked us this week if we were going to go again soon. She's seen such a difference in him. It's out of the picture right now because we just don't have the money, but I know it's what has helped Liam the most.
For now, I'm pleased he is passing some of his goals and while it's so easy to get bogged down by what Liam can't do, it's refreshing to walk out of therapy with the therapists truly happy at seeing some progress.
Liam was quickly outgrowing his Eddie Bauer stroller and it wasn't a good fit for him anymore with positioning. We trialed out a couple of stroller/wheelchair combos and although everyone of them had a negative to it, the Otto Bock Kimba was the wisest choice.
It is German made and looks it. It's big. But that is a good thing because it will fit Liam for years. And since insurance only pays for a new one every 3-4 years, we needed something that was going to fit Liam until he was 6 or 7! This one has a lot of room for growth so it's going to last.
From start to finish we got Liam's Kimba within 6 weeks! That was a record for the therapy place we go to. Usually getting a purchase like this takes months and months.
I love having it. It's so nice to have Liam sitting up properly. It is heavy so I have to dismantle the seat from the frame to load it in our truck but it hasn't been too much of a hassle to do so.
This chair had to have some customization done on it. Because Liam retracts his shoulders and keeps his arms out, they made two plates and padded them and installed them behind his side lateral supports. It's great! It prevents Liam from pulling his arms back too far and getting them caught behind the frame of the stroller.
I love that it allows Liam to sit up better and see the world. And although this is officially labeled as a wheelchair, it's nice to still be able to push him in a 'stroller'.
Liam had his first ever dentist appointment this morning. He did great! He allowed Dr. C to clean them and paint them with flouride with only one gag the entire time! What a marked improvement over the last year when we couldn't even get a finger in his mouth without him gagging and then throwing up.
The dentist says his teeth look great and he should be getting 4 new molars within the next year. If you do the math, he's almost three so obviously his molars are delayed a bit. But it's no big deal, and it comes with the micropreemie territory. He said he'll lose his teeth pretty late too. We shall see! I will have had two kids on apposite ends of the teeth maturity spectrum. Aidan who just turned 9 will have all of her adult teeth within the next year (that usually doesn't happen until the age of 12). And Liam won't even start losing any of his until he's 7!
Liam's had major sinus drainage this past week along with a fever for a few days. He's much better but still has the drainage so it's causing him to gag a lot. And then vomit. He's only slept through the night once in the last 5 days. He wakes up coughing and although he can usually manage the cough it sometimes gets the better of him and he'll throw up. Then Shawn and I are changing Liam, sheets, and ourselves before 3 am usually hits.
The weather is changing and the nights are getting cooler and it's affected Liam pretty good. I'm hoping he balances it all out pretty soon. Cuz frankly, I'm pooped.
On the bright side? His teeth look good! And that's a no small feat considering his NICU past and his reflux/vomiting history!
I had my first meeting yesterday with the school about Liam. Because Liam will be 3 in November, he qualifies to receive services through the school system. While I am leery as to how helpful they could possibly be, I am open to the idea of Liam going and getting some good therapy/playtime/learning time in.
The meeting was just that. I met them and they met us. They already had some of Liam's information in the system so I only needed to update what they had. And they added in what they saw in person.
They got to see Liam get upset when I stopped reading and he wanted me to continue (he tries to communicate his wants). They got to see him bang on the drum when they put it in front of him . They got to see him 'talking' (he is so close to saying hi or hey). They got to see him trying to roll over. All in all, it wasn't too bad. They got to see that there's a little boy in there trying to get out.
We have our big preschool evaluation on October 6th. We'll meet with everyone and he will have all of the evals taken from psych to speech and everything in between.And he supposedly is slated to start 'school' Dec 8th!
For the most part, all of Liam's care falls to me. I run him to his Dr appointments, therapies, and meetings. I order and administer all of his medicines and supplements. I am his primary caretaker. That's the way Shawn and I wanted our marriage to be. Me, being the stay at home mom and him, being the monetary provider. Because we have established things this way (which I love, btw), all of Liam's needs and wants fall to me to take care of. I'm the one here at home with him. I have to show up each day for him.
Shawn doesn't know what supplements Liam needs, which random online stores we get them from for the best prices, or how much of each one he gets. He doesn't need to know because I take care of all of that. It's my job.
Because my job is pretty important, I decided it was high time I started taking better care of me. I want to be around for Liam. I want to see what he's able to achieve, to see what God's got in mind. I am his primary caretaker and he depends on me. I need to stay healthy. I've been running and trying to eat better. And making those necessary appointments you are supposed to make with your Dr when you start to get old. You know... boob exams, colon checks...the fun stuff.
My family has some negative history with their colons. My grandma died from a completely treatable colon problem (diverticulitis). If you read the brochure about it, death isn't even listed as a side effect! And my mom had polyps in her colon in her early 40's. Polyps that are left can grow into cancer if they are the right type of polyps. My mom's were the right kind, but she has had them removed. Twice.
So, my GI Dr. wanted me to have my colon checked with my family history being as colorful as it is.
I'm only 35.
And I am starting to get my grandma's condition.
And I had a polyp already.
The right kind.
The kind that turns into cancer if it isn't removed.
I'm thankful that my Dr takes his job seriously and I'm thankful that I am starting to take my health seriously.
Everyone usually thinks cancer is for old people or that it won't happen to you, but I know first hand that it happens to those of us in our 30's. A girl I went to school with was diagnosed with stage 4 colon cancer at 33. It does happen. And colon cancer is one of the only cancers that you can prevent from happening.
My little problem spot has been removed and I'm free to go 5 years before getting rechecked.
So, go take care of yourselves too. You aren't too young or old to start.
*Looking for zebra's is a nonmedical term that medical people use. When something is wrong they say they aren't looking for zebra's, just horses. It's how they get out of looking for something major when it is likely something minor.
Ok, this video is pathetic. I'm laughing at Liam in hysterics.
But let me explain.
Since Liam doesn't move his body well because of his CP, it's hard at times to see the intelligence that he has. But trust me, that little boy is in there and sometimes he lets it shine really well!
Remember when I talked about how Liam thinks that when the lights go out it's time for bed and he cries? Well, I took it a step further. Instead of turning out the lights, I decided to let Liam tell everyone goodnight when it was time for bed. You know, establish routine, get him ready, blah blah blah. Just like you would a typical kiddo.
This video goes to show that Liam knows so much more than he is able to let on.
The very first time I started the routine of telling everyone goodnight, by the time I got to the third person, he was in tears. That all out, corners down, snubbing fit that just makes you want to hug your kids and tell them it's going to be ok kind of cry. The first time! I had no idea he would understand what was going on in that manner that quickly. All he was doing was 'saying goodnight' and giving everyone a hug.
We have done this routine now for only a few nights and I videotaped last nights so you all could see it. He starts crying before I even get Liam in Aidan's arms. And he's just so very sad in it! All because he doesn't want to go to bed.
Isn't that terrible?
He will work himself up into such a state that he starts to gag and vomit! We didn't tape those highlights for you, but trust me, he does it every time. Our friends were over the other night and Phil said he had never seen a kid so determined not to go to bed that he makes himself throw up to get out of it.
I don't know how to get this boy to bed without him going into fits. I've tried the lights out approach, telling everyone goodnight, cuddling with him.... Nothing works. He does not want to sleep. Ever. He's also decided that naps are not for him either. We felt so bad after this episode last night that I just let him fall asleep from exhaustion. At 10:00. With NO NAP!
Liam absolutely LOVES his new glasses. He smiles every time I put them on. Because he can see now. And he KNOWS he sees better with them on.
We didn't magnify this pair as much as the others (this pair is a -6 while the previous is a -12) and Liam can definitely tell the difference. He much prefers this pair over the last because he will leave this pair on. He didn't care about his last pair and wouldn't want to wear them, ever. I also decided to get a solid constructed pair out of plastic instead of the cute wire rimmed ones we had before. Liam was always ripping off the nose piece and we had to have that replaced several times. This pair is all one piece and has cute little duckies on the sides. The lenses are also larger which I liked because it allows for Liam's preference to looking down.
You can't see it too well in this photo but the 'scratch resistant lenses' that we have a one year warranty on, are evidently not tooth resistant. Liam was chewing on them the first week we got them and put two large scratches in the left lens already.
*While taking this side shots, Liam wouldn't quit grabbing the lens cover to the camera. Which to me tells you a lot, because 5 months ago, he wouldn't have reached out to grab at anything.