Sensory Fun In The Sun

We had a decent day today so liam got a chance to enjoy fresh air, sunshine and grass. We also decided to work on some of his sensory issues so he got to play with dry uncooked rice. I poured a small bag of rice into a small basin then let him just feel it. At first he was aprihensive. But quickly took a liking to how it felt to let it run through his fingers and fall back down. The we introduced a small cup and worked on getting him to put the rice into the cup. He did wonderful. And both kids had a blast. In. Few days I'm sure to see rue plants sprout up into front yard lol

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

 

 

 

Another stay at club med

Dispite all our trying we just couldn't avoid another hospital stay. Liam has been vomiting. Three nights ago he aspirated. Our ped prescribed oral steroid and antibiotics but they didn't work. Yesterday I had to rush him to Children's hospital where he was admitted for respitory distress, possible aspiration pneumonia, and not tolerating feeds. After having IV fluids, IV antibiotics, IV steroids, and a continuos albuterol treatment over night he's feeling much better. He even ripped out his IV this morning :( they're going to try feeds. Pray fully he tolerates and this will be a short stay.

Hectic Crazy Busy Life

Sorry for Lacking on the post. Alot as been going on and I've got my hands full. Ill try to get you cought up:

Last Sunday November 11th Liam's Jport on his button litterally broke completely out. I had to rush him to Children's where he was admitted since he had to undergo surgery.

 

He had surgery monday afternoon then was released at 9:15pm. The GI who did the surgery said that his tube was completely clogged up so I have to clean it once a week using soda. YES SODA, i.e. pepsi or coke.

Liam also has to be put on the surgical roster to have his tube repleced every 2 to 3 months routinely since theyve had to do emergency surgery 3 times since August.

He also has to have a mediport put in before his next surgery and to do that he has to be perfectly healthy, which brings be to my next update.

 

Today is day #3 of Liam having a snotty nose, cough and congestion.

Everyday it gets worse but we're thinking it's due to the weather flip flopping. Atleast we're hoping.

He goes to his Ped on wednesday so we will know more then.

Im praying he didn't catch RSV, he doesnt get his first centages until wednesday,

 

During PT we talked about how Liam's right foot turns outward. We're going to work on manualy turning it inward. When she comes back in 2 weeks shes going to bring these strap things thatll prevent him feet from going outward. She said this could also be a cause for him not being able to stand on his own yet. We're also working on getting Liam to be able to move from say the couch to say his play table by turning around and steping away from the couch toward the table.

It's all part of catching him up really.

 

On the eating by mouth front, he still only hold interest for suckers.

He will bite on a baby rice cake or numnum but wont eat it.

No liquids by mouth yet either.

He's still on baby formula because we havent figured out why he doesnt tollerate concentrated formulas and all Junior formulas are concentrated apparently.

You can touch his mouth withou him gagging now.

Thats a HUGE step.

You still cant put anything in his mouth though.

 

 

 

 

Lanie has been a loving, doting big sister.

She spends most of her days playing with Liam.

She uses his blocks to build tall towers and Liam pulls a Godzilla by destroying them. They just laugh and laugh.

Infact she does alot to make him laugh and no one can make him laugh like she can. We're very proud of her handling everything so well.

With all Liam's needs we dont get to spend as much time just being with her or even buying things for her.

She understands that brother needs things and even helps.

We cant go into a store without her saying "Oh this would be perfect for Liam".

It's enough to bring me to my knees sometimes.

Shes so giving and loving.

Most people dont get to see that part of her.

I wish there were more hours in the day to do whatever she wanted with her.

 

I find myself looking at Liam during med time or feed time and thinking "Why cant he just be normal?". I feel guilty because to me its like wanting to change him and I love him, his personality is amazing. But Id love to spend less time being a nurse and more time being their mom.

This time last year:

Liam weighed 10 lbs 4 oz. As of his last weight he was around 25 pounds. Last year he wasn't even on the chart. This year he's in the 10th percentile. He's come a long way.

This time last year Liam had gotten his first Gtube. We all thought he's have it out within the year. Now he has a GJtube and we know for a fact that he will have to have it for atleast 3 to 4 more years :(

 

This time last year Liam fit so perfectly in my arms. He wasn't happy unless he was being held.

Now...

Liam barely likes to be cuddled unless he doesnt feel good. He is so much taller and he's so heavy its hard for me to hold him for long.

 

This time last year Lanie was shorter and chubby. Her hair was barely below her shoulders.

 

This year, her hair cascades down to the middle of her back.

Her personality, and attitude have tripped.

Shes taller, leaner.

And funnier.

 

Ive changed too.

Even after the time in NICU and the 2 hospital stays I was still happy.

My hair was still long, to my lower back. I looked alittle tired but I hadnt aged too much.

 

Now... Ive chopped my hair off. Put on 5 pounds.

I am constantly tired. Sometimes I put effort into trying to hide the circles, the exhaustion, the stress with makeup and clothes, like above. But even then I look like Ive aged a good 10 years in 1 year. (below was begining of October this year)

Even Justin has changed. Though he's making a huge effort to do it purposely. He's lost alot of weight and started builting mucsle. I have to say Im jealous that I cant seem to find the energry to work out when everything is said and done.

Oh and Liam got another hair cut. After that IV in his head we had no choice.

Last pic of Liam with hair

 

"No Dad I dont want my hair cut"

 

Even bald he's a cuttie :)

 

Ive also posted a few new videos on YouTube.

You can check them out on my channel "BuggiesMommy"

 

 

 

S4L Christmas Toy Drive 2012