Straw Houses

Today I got a call from Liams preschool that he was acting weird. After requiring oxygen last week, no one wanted to take the chance. I agree. 

They said he suddenly got quiet and became very clingy, just wanting to sit in Mrs B's lap. She said she didn't mind that at all but they wanted to make sure he was ok. 

Turns out Liam was fine. He said he had just missed me and was sad that I hadn't stayed today. 😳. Well who could be mad at that (this time anyway 😂). All joking aside, I get it. He missed me. He's got some anxiety about me not being around and some attachment disorder. It's to be expected after me being around 24-7 for his entire life (minus the 2 days after he was born when our local hospital wouldn't release me to follow him immediately). 

It's ok. We will get through this. So today they sent home the "art" project they were getting ready to do in class. They didn't want him to be behind in making his three little piggies book. Today was the straw house. 

Liam used the scissors all by himself to cut up yellow tissue paper to create the straw. Then he glues it onto the "house" which he cut out that morning with me. It's so awesome how he doesn't even realize how much he's learning while having fun. 

So here's our happy for today. Liam doing things that we weren't sure he's ever be able to do: using scissors, squeezing the glue bottle (with little help) and creating something awesome. When Liam was in NICU and things were grim, I remember thinking how sad id be if he never was able to make me pictures and how empty the feeling was in the bought of not being able to hang up his artwork. But he's surprised and overcome all expectations. You got this Liam! Keep it up buddy!! 

Being Prepaired

          If there's one thing I've learnt on this medial journey with Liam, and if there's only one piece of advice I could give those dealing with CDH in their lives, is to be prepared....

BE PREPAIRED. 

          I don't mean become a dooms day preper and hoard canned foods and bottles of water. (Although maybe one day that would come in handy). 

          Know your child's health, inside and out. Memorize the symptoms or actions that indicate your child can't breath or has reherniated (just examples). Don't rely on machines to tell you how your child is doing. Example:

          Liam shows signs of desatting or difficulty breathing long before the numbers on a pulse ox machine drops. 

          Today I volunteered in his preschool class and because of the horrible time he'd been having with his sinuses and gtube infection, I went packing inhalers, a stethoscope and oxygen. Thank God I did because as I sat there at the "breakfast" table with him and his friends, I watched as Liam suddenly got very quiet and the color drain from his face as his eyes glossed over. I scooped him up and took him into the little preschool office and hooked him up to oxygen.

          By then he had already started having some difficulty breathing. He felt better within 5 minutes. Within 10 minutes he was able to take 2 small bites of food and within 15 minutes started chatting with his friends again. By the end of school he was back to acting normal, minus his normal spunk and hyperness. 

          It wasn't until nearly 4pm however until we tried to go without oxygen. Well in normal Liam fashion, he ripped that cannula off and said he was all better. His spunk and hyperness returned two fold. It wasn't until bedtime, after he'd fallen asleep that I hooked him back up. His lite lungs were just working too hard and needed a rest. 

          This wouldn't be the first time being prepared has saved us from catastrophe. Knowing Liam inside and out has saved us as well. So many times I've rushed Liam to ER and caught pneumonia or rsv at the very early stages and it's saved him from getting sicker than he should have. 

          But today. I probably turned a few shades paler when I watched Liam suddenly change. The teacher nearest us, Mrs C, who had her back to us, said she heard Liam get quiet and knowing he's not normally like that, she turned and saw him get suddenly pale as well and knew something was wrong. Thankfully the teachers all stayed calm and acted like nothing was wrong. 

          Knowing that these teachers saw first hand how quickly Liam can go from great to bad in seconds and seeing the symptoms gives me comfort because they were able to tell me what they saw and now recognize when he will need to be put on oxygen again in case I'm not there. We created a little safety net plan in case this happens again. From now until the end of winter, oxygen will be take  to school daily in case this happens again because there's not enough time to run him to the nurses office and hook him up. 

          I feel confident that I can leave Liam in their care and not have to worry if they can take care of him. It's such a breathe of fresh air that I could cry. I've worried that this day would come and they'd refuse to let him stay unless I was there. But no. I watched as they navigated Liam and his oxygen tank to different centers without any problems. 

          After being put on oxygen, all the kids were curious as to what it was. They had me explain to the kids how Liam just had trouble breathing sometimes and needs extra help. One kid asked if it was the same as the astronauts used in space and then all the kids thought it was so cool how Liam was like an astronaut. I love how accepting children are of their differences. 

          Mrs M, the district special education teacher came to see Liam today and since I was there we had time to chat about her view points of Liam's progress and what I can do to help him achieve his goals. There wasn't much I wasn't already doing, which she was very happy to hear. We are now using a new app to trace the alphabet and this helps Liam with his fine motor skills, something he needs lots of help with. She was going to talk to the OT and see about getting him those services to help with his fine motor issues. But for now no other changes are being made. 

          Today was a good day and a win against CDH. Nothing will keep my baby boy down and we have a great team standing beside him to help him through it all. 

Our SanFransisco

          When you think of SanFrancisco you think the Golden Gate Bridge. The iconic red trolleys. Walking down Haight and Ashbury streets. Or maybe you think of Alcatraz where Al Capone, George "machine gun" Kelly and many other natorius criminals were improssoned. Maybe Fishermans Warf comes to mind where you can get fresh seafood and visit the wax museum. 

          I can tell you what the Golden Gate Bridge looks like from a distance but can better tell you what the Bay Bridge is like to cross during a heavy rain storm that all but flooded the bridge, while worrying and rushing to get to my son who had been flown to UCSF. 

          I walked Haighy and Ashbury streets a million times but it wasn't to sight see. The first time I went down them was to find the Goodwill to buy jeans that fit after weeks in NICU, 4 hours away from home and my own clothes after giving birth to my son. I walked them a million times after that to get from the Ronald McDonald house across town to the hospital every weekend to be at my sons side. 

          I can give you historic facts about Alcatraz I learnt in school or on the Internet. I can also tell you how we made plans to visit after Liams escape from NICU but never got the chance. 

          I can tell you that you can't visit SanFransisco without exploring Fishermans Warf but I can't tell you how it smells to walk along the shops and restraunts or how long it takes to explore the wax museum. 

          But I can tell you how the hospital smelled of soap and dissinfectant. I can tell you that at 7am there's a long wait for the elevators and an even longer ride up to the NICU on the 15th floor. How I stood in silence every day, squashed into a corner in the elevator trying not to let my claustrophobia get a grip on me just so I could be at my sons side. How I had to go down to the 7th floor at 11am everyday to reserve a bed in the mothers sleep room so I could get a few measley hours of broken sleep. 

          When I think of SanFransisco I think of the 6 blocks I had to walk with luggage in tow every week to the laundry mat to wash my clothes. How in the 48 days there, I never had a few moments of privacy to cry it out. And when I held Liam for the first time how nervous and scared I was and how he turned blue on me. How years later I still have problems holding someone's baby because I flash back. 

          SanFransisco was a tough city for us. The worst of times with Liam and CDH were there at UCSF. But it wasn't all bad. When I finally got to hold Liam a second time and he didn't turn blue on me but held my finger and looked up into my eyes until he fell asleep. And how my husband called from home as I was holding our son and I cried telling him how wonderful it was to finally have our little miracle in my arms and how I never wanted to let him go. 

          The first time we took a nap together was there in NICU. Once you got used to holding a baby attached to hundreds of tubes and wires it was easy to get comfortable and fall asleep. The first time I got to change his diaper I was so excited. Finally I got to do something all moms do with their kids. I didn't care that it was diaper duty. I grinned from ear to ear and had anyone nearby snap a picture for me. 

          Our first family picture was taken in NICU by one of Liam's nurses. That picture is still framed in our living room. And when Liam finally started needing clothes and toys, how happy I was to be able to run out and get whatever he needed that second it was requested. And when we were told he was going home and how happy and shocked everyone was. 

          That's my SanFransisco. All our good memories wouldn't even be possible without the amazing NICU staff. Our two primary nurses who didn't just look after Liam, but me too. Having our little boy survive what he went through is hugely due to their hard work, dedication and their love for our little boy. 

          And since its NICU nurse appreciation day, I want to thank these two lovely ladies, Cindy and Sue because without them we wouldn't have our sweet boy. Without then we wouldn't have been prepared or equipped to deal with his needs when we got home. Without them I wouldn't have survived NICU unshattered. 

          That's my SanFransisco. Full of misery and wonder and miracles. We owe it to ourselves to go back and take it by storm. To enjoy the sights and the tourist traps. And to thank our beautiful NICU team for saving Liams life. 

Nurse "Doctor" Sue (as Lanie called her)

Nurse Cindy

Learning To Thrive

(Image above is Liam chewing down on Mt Mikes Pizza)

Liam's first full week of school went great. There's been a lot of progress and discovery.

His physical therapist said he's doing worse than she remembered. That was upsetting. I work with Liam every day and I didn't think he was getting worse. I didn't see him get a whole lot better either. Two days ago the special education teacher called me. She had spent two hours with him in the class and said that his teacher was a perfect fit for him.

She also said that she thinks that Liam's low muscle tone is affecting his ability to use the

bathroom. The theory is that Liam can't control his urine flow and that he doesn't know when he's peeing. It makes perfect sense considering I've been working on potty training him for 2 years now. Now we're doing a timed training method where we have him sit on the potty every hour on the hour. It helps but it isn't accident free. I'm worried how Kindergarten is going to go if he's not potty trained. It's in his IEP that he's not potty trained but still.

(Liam flexing his muscles in his superman shirt)

Liam has always had texture issues. It's been a large problem his entire life. Finger painting

has been something he hated. Yesterday and today he finger painted and loved it! His teacher Mrs H taped off one of the carpet squares just for Liam so every day he knows exactly where he's supposed to sit and he gets really excited.

Every morning the class eats breakfast together. The teachers are working hard to get Liam

to drink milk. That helps me out because he needs the calories. He's been doing very good eating breakfast with his "friends". He still doesn't eat a lot but it's a start. We're also working on keeping his hands out of his mouth. We tried bracelet he could chew on but he just took it off, had it on the ground wrapped around his shoe so his teacher took it away. So no more bracelet for Liam. He just has to learn to control the stimulation without using his mouth.

Liam's speech has improved drastically. It's almost like he's a new kid. The speech

therapist hasn't even seen him yet but because speech is so ingrained into this school he's improving daily. He's using more complete sentences and talking clearly. Finally he's able to tell me what he wants, how he feels or even just about his day and I understand his without having to decode him. He still has times or days where his speech isn't very clear and that happens more when he's tired.

(Liam loves to get on stage and dance and sing along at church on Wednesday nights)

We were having problem with him tolerating his night feed, then he got better and worse again. This whole week Liam has handled his feed so much better. He's up to 105 mls per hour for as close to 12 hours as I can get him. Unfortunately he got into a coughing fit early this morning and I had to turn off his feed an hour earlier so he wouldn't vomit.

Every morning I wake up Liam at 6:45. He then sits on his potty in front of the tv and watched cartoons for 45 minutes to an hour like that in an attempt to empty his bladder. This helps. After he uses the potty he gets to pick something from the prize box that's full of little toys and stickers. This reinforces potty time for Liam and gets him excited to use it.

Liam and our kitten Ozzy have continued to bond. Liam and Ozzy continue to play chase everyday and Ozzy has taken to sleeping with Liam. Ozzy likes to sleep on Liams pillow and Liam likes to sleep with his feet on his pillow and his head at the foot of the bed. Its funny to see this.

All in all everything is going good. Liam is learning how to thrive finally. We still have a long road ahead of us in life but the story has to start somewhere.