Jailbreak

Yesterday and today Liam has had the rare chance to be outside and play. This boy loves being outside. 2 hours yesterday and 3 hours today. Yesterday he started trying to Stand up on his own and has done it several times today. I am so proud of him. Our outdoor experience in pictures:

Feeding Therapy and doctors appointments

I had every intentions of updating yesterday after we got home but I was too exhausted. Yesterday seemed to go on and on and never end. We left the house at 1pm to go to feeding therapy in a city 20 min away. Feeding therapy went great. They said I had been doing everything I was supposed to be doing and couldn’t have done anything better than I had. They saw how he puts the Gerber puffs on his tongue then spits them out. They also saw how he takes bites of the mummums then spit of the pieces. They said that it was really good that he understand that its expected and socially acceptable for him to do so. They also thought that the fact that I stuck with it even though it took 5 months of persistence and irritation and dissapointment on my part was amazing and the best thing I could have done. I explained how Liam will undo his tube extensions and feeds to suck the formula out of the tubing and they thought that was amazing. They asked if he did that when he was off alone by himself when he thought no one was watching and the answer was 80% yes that he sometimes does it in front of us as well. So they want me to bring his formula for the next visit and theyre going to put It in a honey bear that has a straw and see what he does. They feel that the reason he doesn’t like to eat is that he has a high pallet and from being intubated and exubated so many times. They feel his mouth is sensitized and that we need to work on desensitizing it but that its very hard work. YEA I KNOW! Ive been at this for 18 months. CCS approved 8 visits, 1 visit per month. After an hour long appointment we then drove in the opposite direction for an hour for a appointment with the pediatrician. Then waited an hour and 20 minutes in a waiting room (thankfully a private room) before getting into an exam room. Liam weighs a whooping 21 lbs 8 oz!! Yay Liam! That’s alittle over 1 pound in less than 4 weeks!! We are very happy with that kind of weight gain. Our ped was very happy to hear that Liam didn’t get really sick when he caught RSV and contributed it to the synagis. I have to agree. We spend 10 minutes with out ped before he left us to wait for the nurse to get Liam’s second set of synagis. We waited for her for half an hour. Then finally it was time to drive 45 minutes back home. So you see why I was exhausted. The stress of trying to make it to the ped from feeding therapy, then having Liam is a place so packed with people who were sick. Horrible! And between everything I was dealing with phone calls to ATC and Pulmanology to arrange for a nurse to come to the house and “teach” me how to flush Liam’s mediport and have the mediport supplies delivered to the home every month. The case worker at Childrens says there was no nurse that could come out in our area so she made an appointment with ATC for me to go there every month. I wasn’t happy with that arrangement and our ped agreed to come to the house ad teach me because he’s done it a million and 1 times. When I called ATC to cancel that appointment and explained why, they said I had to call Pulmanology because they were the ones who wrote the mediport orders. When I did she asked if Liam had Childrens health care for supplies. When I said yes, she said they have a nurse that can come out to our home and teach us. That they have a certain protocal that HAS to be followed and they need to ensure that I’m taught their protocals. I was so estatic to hear that there was a nurse that could come and that they would arrange the monthly delivery. Our ped and I have been trying to arrange all this on our own and its been a pain in the rear end. Problem solved.

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Liam has this new thing where through the night he wakes up crying and screaming when he’s peed his diaper. I have never seen a baby so uncomfortable with a diaper that has alittle pee in it! And it’s only at night! Every 2 hours it seems through the night Im changing his diaper. And almost every night Im getting peed on! Im so sick of being peed on lol. I think Liam gets a kick out of it or something.

Besides his new night time routine he has started retching again and sometimes even vomiting. Several times I find myself rubbing his back to soothe him until he’s stopped. So now I get to play around with the timing of his Erythromycin again switching it back to 4 times through the night instead of day…..again. Hoping that solves this issue.

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Miss Lanie is going through that stage where she makes huge messes but doesn’t want to clean them up. So for the last few days she’s been having to spend A LOT of time just cleaning her room. She leaves her shoes, clothes and toys shrewn through the house and Im having to constantly tell her to pick her stuff up. It’s been so hard to keep up on everything with two kids making such huge messes. Hoping this stage will be over soon. Ive also warned her that if she can’t keep her room clean and take care of her toys than she doesn’t need a birthday party. Nor will she need presents.

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1/08 Liam relaxing on mommy watching cartoons

 

1/08 relaxing on mommy watching cartoons

 

1/08 Say cheese Lanie! lol

 

 

 

New Year, New Discouveries

Despite Liam having RSV and the entire house getting sick, we had a good New Year. Our neice Kayla came and spent the night with us. We watched Pitch Perfect and laughed the entire way through. Then we played a very old video game, Guantlet. Yes a great night!

It was our first New Years in the new house so we weren't exactly sure what to expect from the neighbors. The people behind us leight fire works which we heard but couldnt quite see. Someone in the distance shot off illegal fireworks that went high in the sky and exploaded in a array of colors. Very beautiful. Then the neighbor a few houses down came out front and yelled "Merry Christmas" and we busted up laughing. I guess he heard us laugh because he decided to yell again "Merry Christmas" which only increased our laugher. Then his brain finnaly cought up and cleared a but from his drunkin state to yell "OOOOOHHH Happy New Year" before retiring back inside. We were in stitches.

Since then it's been "business" as usual. Liam still has yet to act sick, despite from sleeping more than normal. Although he's done it for a week now Im begining to think its just part of his new routine. Especially since he's been growing so much. I can feel weigh gain when I pick him up. He better learn to walk real soon because Im not sure how much longer Im going to be able to carry him. Guess its time to work out my arms huh.

The heel cups Liam's Physical Therapist gave him actually made it worse. We had him completely stopped from walking on his toes. It was one of the first things we started working on. Thanks to his shoes he stopped within a week. I put the heel cups in and he immediately starts walking on his toes again. It took 2 weeks before he started walking flat footed again. I don't know how the PT is going to feel about that but the heel cups were counter productive making him worse instead of better.

We bought Liam a wooden train table on clearance after Christmas sale and put it together yesterday. Well I guess you can say its Lanies too because she plays with it all the time. Anyhow. I spent like 45 min assembling the table itself and then another half hour just trying to put the track together like a jigsaw puzzle. Lets just say Hurricane Liam had the train derailled within 10 seconds of getting near the table....

But his smile as he destroyed it all was worth every minute...

 

 

Then Daddy decided Hurricane Liam should be escaladed to GODZILLA LIAM!!

And ofcourse we all laughed.

Today was a good day as well. Liam woke up in time to have cuddle time with Daddy before he went to work...

Then things got interesting and out of the normal. Liam was happy unless he was walking. All he wanted to do was walk and walk and well walk. And because Liam cant walk on his own, I hold his hands. He didn't want his walking toys today either. So for 2 hours, we walked around. Inside, outside.

And thankfully Lanie was around to snap photo's of us.

 

 

Baby boy is trying so hard to walk and be mobile. All thats stopping him from doing it himself is his ankles. One day little lamb, stay patient and keep your faith. <3 p="p">