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"
