20 to 23

It's official. In Liam's 23 months of life he has been hospitalized 20 times. He was just released yesterday from a 3 day stay at Children's Hospital. The final diagnosis is Aspiration pnuemonia, cellulitis of the stoma, hypoglasemia and dehydration. He was sent home with heavy duty antibiotics. Prayfully this will be the last hospitalization for a long long long time. He's doing good. He's not desatting not is he on oxygen. That's the best we could ask for right not. Liam's birthday is right around the corner so were praying he isn't sick for it. 

Tuesday night we had to put Liam on O2 per pediatrician orders because he was breathing fast. Unfortunately he still had to go to ER. 

Sitting in ER watching Mickey Mouse on the kindle waiting for his room. 

Liam did not feel well at all. He fell asleep within 20 min after IV fluids started. He cuddled with Mickey ;)

Still in ER after X-rays and Liam falls back asleep and refuses to let go of the kindle. It was comforting him. 

Liam woke up Thursday morning and automatically started playing with his Thomas. He still didn't feel very well so he just laid there all morning. His fevers were still on and off all day. 

By late Thursday afternoon Liam was feeling better. The nurse brought blocks so we built a tower. 

Thursday Night I have Liam a sponge bath after dinner and dresses him in his superman pjs. He was feeling even better so I let him run around the room and we built more towers. I had to go even bigger each time. It made for fun watching Liam knock them down. 

He was very polite to the staff. When the pct asked him to come stand on the scale Liam stopped playing and did as asked. I was so proud of him. The got a kick out of watching him walk around since it was his first hospital admit since he started walking. 

He gave his night nurse hugs. She's had him many many times and was so happy to see him walking finnaly that she said she just had to get hugs. Of course Liam was all too happy to oblige. 

Liam flirted with his RT all three days he was there. She knows him very well and enjoyed playing with him. 

I'm glad we had a very short stay. Thank you to our Pastor Mark, his wife Valerie and youngest daughter Hannah for stopping by early Friday afternoon and praying for us. 

Officially 1 month

It's officially been a month since Liam started walking and life has changed so much. Liam no longer crawls. He can stand up without using anything to help him. He went from walking extremely slowly without being able to hold anything to now holding toys in both hands, talk and practically run. It's more like fast walking lol. He's hit the terrible 2 stage and throws himself down during fits. He plays with hotwheels all the time. He growing so much. Its so exciting. He's still having sleep issues, like alot of other CDHers. Even through Singular, Benedril and Melatonin (all part of his night time med schedule) he still can stay awake. Last night he was up until 10:45pm then woke up again at 5am (usually its between 1a and 4am). Then slept until after 9am. He has an appointment with his pediatrician Thursday then with his pulmonologist Friday. I'm not ready to hear anymore bad news so praying we hear all good stuff. 

Giving Up Is NOT An Option

I want nothing more than to eat away my aggravation an frustration right now. I'm even ashame to admit that I have given in because the emotions are just too overwhelming. I wish I could say feeding thereapy went well but the fact is it didn't. Liam started drinking te beginning of May, then the next day he was admitted to Childrens because he it sick. And he refused to drink after that and still does. After he eats he sounds junky and its everytime he eats, but worse with some foods than others. They start feeding him at thereapy and a few bites into it he sounds horribly congested. They notice it too so I tell them it happens everytime he eats. We start talking about it and they think he's "silently" refluxing. At first one of the OTs throws out stop feeding him and even she hated the idea. I told her it wasn't an option and that's the reason were having such a hard time getting him to eat and drink because pulmonologys idea to "fix" this issue when Liam was 6 months olds was to stop feeding him. She said to keep a log of when he does this, how often and which foods are the worst. Of course I was able to answer all those questions for her on the spot. She suggested another swollow study since on his last one over a year ago he refused to eat anything so the only results we got were that he has excellent control. So now when I go to the pediatrician Thursday and the pulmonologist Friday I need to talk to both of them about it. OT also thinks his only working diaphragm is weak and Tireing out easily making these issues worse and why he doesn't want to drink. They suggested a few diaphragm strengthening "excersizes" involving party kazoos and bubbles in hopes they will help. They also want me to use the tick-it stuff. They tried it in tomato juice to a honey consistancy and he ate it. They also think that he's avoiding the honey bear and straws because he's not only been intubated many many times but has been suctioned even more. So now its getting the other doctors and specialist to co-operate and order the test. It's so frustrating. The only appointments I could count on getting only good news was Brightstart and Feeding thereapy. And now I can't even count on Feeding thereapy to be stress free. 

23 Months Today

Little Liam Lamb turned 23 months today. Just 1 month left until his 2 year birthday bash. In a way it feels like this last 23 months has been 15 years but I also cannot believe he's going to be 2 already. I still frequently find myself taken back to the halls of USCF where I lived for 48 days while Liam was I'm NICU there. He's come so far in such a short time. Two years ago today I was in miserable and in physical pain. I was on bed rest because I was in premature labor and had been for quiet some time. I  spent many night crying in pain while everyone else slept just so I could make it through the day appearing strong and together. At this point two years ago I wasn't hardly able to sleep. Still I knew that God had given me a precious baby boy and I knew it would all be worth just to hold him. I didn't know then that Liam would be several weeks old before I got him in my arms. 

One year ago today, I was getting anxious and nervous. Would something happen that would get him stuck in the hospital an unable to celebrate his 1st birthday with all his family and friends? Things like this frequently ran through my head. I was excited but it was over shadowed by anxiety and fear. Liam survived. We were only 1 month away to being able to say "We did it! We survived NICU and the 1st year". Liam was just learning how to sit. He had his stuffed puppy 'Baba' he had to take everywhere. He was on oxygen full time and stuck to a feeding pump for 24 hours a day. He was on J feeds, ate nothing by mouth and barely started jabbering and holding toys in his hands. He had 9 hospital stays and countless surgeries. He spent more time in the hospital than home and we cherished every minute we had together as a family. We still do. I knew we were at the point when things were supposed to get better. That's what we kept being told and what Id tell my self everyday all day just to make it through. Our days consisted of meds, treatments, feeds, therapy. There was so much of that and so little time for anything else. Still, we held on knowing it was all worth it. 

Liam and Baba. Wow a year later and he looks exactly the same minus the oxygen! 

And now, one month to Liam's 2nd birthday and I'm excited, shocked and elated at how far he's come. Most of his progress has been since March when he got his AMT mini ballonless Gtube. Since then he's started eating, walking, talking, and just all around taken off. This time last year he rolled around the living room to get into things. Now he practically runs. And he climbs. He gets into everything! Takes things that aren't his and plays keep away. His laugh fills the house and is contagious. I absolutely love it. And even though I keep a bag packed for the hospital I don't expect to have to go anytime soon. No longer do I worry with every little cough that we will end up there. I'm more confident than I was a year ago, stronger, smarter. This time last year spending time outside landed Liam in the hospital. Now, he practically lives outside. He soaks up the sun, plays in the grass and gets dirty like every little boy should. He loves cars, has started his own collection of hotwheels and other cars. He carries them around everywhere and knows all the good places on the house to make them roll. He won't take his eyes of the tv when NASCAR is on and cries during commercials because e wants more. When a car drives by he stops what he's doing to watch it. He makes it a point to climb onto his train table daily and sit in the middle and make the cars and trains go around him. I just introduced him to the old superman cartoons and he loves them. Meds only happen twice a day now. He's only hooked to his feeding pump an pulse ox for 12 hrs at night and 3 bolus feeds during the day. He's a little piggy some days and won't stop eating and other days won't hardly eat at all. Most importantly, he's my son and I love everything about him. 

Last years post: http://mommyconfessionalinmyshoes.blogspot.com/2012/06/11-months-old.html?m=0

Blessed

Yesterday I get home from the store and am unloading a bag. Liam comes in and out of nowhere says "what you buy mom?" WOW! I paused in utter shock and staired at him before finnaly answering. Pure Craziness! And today when the nurses stood up to leave Liam looks at them and says "bye" like he couldn't wait for them to leave. Lmao oh my son. And now when I ask him if he want to eat he goes to his high chair and waits to be put in it. Ill show him food and he will actually shake his head no to the things he doesn't want. When you offer something he does want he laughs and tries to sign "eat". Sometimes when I tell him to come to me e laughs and tries to run away. When he needs a diaper change he will lay down and grab at his diaper. He lies down too when he sees his tube feeds. Sometimes he doesn't want them and tries to run away. When we ask for a kids he will lean over and kiss us. He does high fives, knuckles and blows 'em up too. When he sees me trying to do sit ups he runs over and lays on my stomach and laughs. He figured out how to climb daddy's chair now too and if we're sitting in it then get up, he runs over and climbs in it and laughs. He's even climbed my bed. He thinks its so funny to take our stuff and run away with it. He spends most of the day laughing. It's such a huge change in him. He has such an honry personality and you can tell he loves life. We're so blessed. Liams facebook page has been shut down for his safety and a private group was started in its place so we could have more control over it. http://www.facebook.com/groups/LiamMichaelBryant

Lanie has been sick since last wensday. Today is day 8, and it looks like it might be the end of it. Her allergies acted up and turned into a sinus infection. She ran a fever for 3 days and slept most of those three days. All that's left is her nose. In the mornings its really gunky but she's got her energy back and her apitite. I was so worried when she first got sick that it was something that Liam could catch but thankfully it wasn't. 

I've been working on S4L FB adding more CDH resources. Next ill be vamping the blog. 

FB http://www.facebook.com/ShootingForLiam

Blog http://ShootingForLiam.blogspot.com

There's alot going on at my Cherubim boutique. Weekly sales, games, offers. Right now through the 14th if you spend $45 at my kitsylane boutique you get $20 off. Check out my FB page for details http://www.facebook.com/ShopCherubim

http://truliefree.kitsylane.com 

Uninvited Visitor

So again our house has been bombarded with an uninvited visitor. I am 99% sure this one is only here to visit LanieBug. Her allergies have been acting up since wensday and as of last night I am positive its turned into an ear infection and possible sinus infection. I am grateful that it cannot be shared to Liam but hate seeing my baby girl sick. Last night she was running a low grade fever. I checked her temp throughout the night and thankfully it stayed away after some Tylenol. However this morning it was back until she took another dose of Tylenol. I ran to the store and got her orange juice, animal crackers (she said she was nauseous), chicken noodle soup, Popsicles, bananas, more Benedril, cough and cold (just on case), a doodle board (to see her smile), and flentones multivitamins. In retrospect, I should have started her on vitamins when Liam was born so she wouldn't get sick as often and spread it to her brother. Knowing that she's getting ready to start kindergarten with alot of other kids its for sure that she's going to catch some buggies and bring them home with her to share. I'm hoping to strengthen her immune system to that it happens less. I also started giving Liam the same multivitamin because his immune system needs assistance even more that big sister. This situation brings to mind several tips for those of you with CDHers or other chronically ill young children with older school age kids:

1) When your school age child gets home from school make it a rule that they must immediately change their clothes into clean "play clothes" and put their school clothes in the laundry room. This will help the germ from spreading to everything they touch or sit on. 

2) Make your school age child wash or sanitize their hands when they come home before touching anything. I' have them wash, change, then sanitize to be safe. 

3) Shoes carry alot more germs than most people realize so keeping them out of reach of your young baby or chronically ill child is a smart idea. 

*Lanie tends to touch the soles of her shoes for some odd reason so I'm always having to explain why she shouldn't and make her wash her hands. 

*Remeber if you have a toddler that walks that their shoes are also dirty so they aren't safe to play with. I know it can take some adjusting to remember that its not cute when baby plays with his shoes anymore because he's been walking around in them. It's something that I frequently forget with Liam being a new walker. 

4) If one of your kiddos does get sick, keep them away from everyone else. Germs spread fast. Trust me I know how hard that can be. Liam loves to be with Lanie all the time and so they both end up suffering when one gets sick. 

* Keep masks in the house so when one does get sick they have to wear one to keep their germs to themselves. They sell them at Walmart, any drugstore and the dollar tree. We keep them on hand at all times. You can always let them color on the mask to make it fun for then to wear. That's been a huge hit in the past at my house. 

5) When someone gets sick start pushing orange juice and anything with vitamin C to the whole family. Vitamin C can help prevent healthy kids from getting sick and can help sick kids fight off the germs. 

6) Use Lysol disinfecting air spray to keep the bugs from spreading. We spray the house down atleast once a day because of Liam. We also use the disinfecting wipes on everything: counters, door handles, cell phones. I clean my phone at the least once a week. 

I hope these tips help cut down on buggies in your home and if you have a tip Id love to hear it! 

Babies Day Out

We had a exciting day today. Liam and I spent the day with Aunt Rose and Uncle Cliff. They picked us up and we went to lunch. Then visited more family. We got to see miracle baby Daniel Lee who was born 1 month early and turned 1 month old today. He is absolutely precious. He spent 1 week in NICU, never needed oxygen and is thriving. He weighs 6lbs and is 20" long. I was so blessed because I got to hold him and spoil him the entire time we were there. I even got to take his pictures. Liam did amazing, he wasn't jealous at all. 

Liam's had great improvements in eating today. This morning he ate cream cheese. At lunch he ate a ton of French fries (he normally won't eat any). After we got home from our day out he ate for an hour straight. He could get enough. He ate the bread from my sandwich (most of my bread), a bunch of chex mix, alot of cool ranch durritos (helped daddy finish off the bag) then cried for more food because he wasn't done. He finished off with strawberry jam on bread (ate a tablespoon of jam an threw the bread). I was beyond shocked. I'm lucky if he eats that much in a 3 day period and he ate it all at one time. God is really working wonders with our little lamb. 

Feeding Pump Tip

After months of Liam sleeping through the night but having to continue to wake up to add formula I the feeding pump and to re-prime it every 4 hours, I was fed up! Formula cannot stay un-refrigerated for more than 4 hours because it goes bad. My solution? I got those insulated bags from when they'd mail me Liam's refrigerated meds that needed to stay cool during the journey. I figured I meds can stay good traveling for 2 days in these bags, surely formula will be fine for 12 hours. I cut a small hole in an upper corner, where the opening is so I could hang it on his IV pole. Then I cut a hole in the corner diagonal to that big enough for the tubing to go through. After filling the bag with the formula he needs for the night, I add a few ice packs to keep it cold. Liam normally uses just a bit more formula that the bag can hold at one time so I just refill it after I go to bed a few goes after he does. I've been doing this for a week now and its been a life saver. The next morning the bag doesn't look gross from old milk either because the milk never went bad. His tummy also handled is better. You can buy insulated bag at most stores. I've also used a zip lock bag and a few other things but this works the best.