Toddling

Mr. Gavyn has really turned into a toddler over the last month. We are moving away from using "walk walk" as he likes to call his medical walker. He is still using a little push walker or holding your hand for the most part. In the last week though he has gotten way braver about taking more and more independent steps. It is exciting for the whole family to see him walk from the couch to the ottoman or table to me or Ryan. We all cheer him on and he knows he is hot stuff. Mostly now it is a mind over matter issue for him. Physically he can do it and everyone knows it but him. That is always the last battle for him in over coming obsticals. Isn't it for everyone? Once we build his confidence he will take off and being outside chasing his brothers by the end of fall. He is also conquering climbing. He has been climbing the stairs for about a year now but recently he has figured out getting on the ottoman and up into Nevin's toddler chair! The couch and chair are still a little high for his short little legs but he will be there soon enough. He keeps moving in the right direction and every week brings new adventures.

Turning 2!

I guess there is a pattern emerging on this blog, updates every six months or so? In a way I am glad since it means there is less going on with Gavyn that I need to process out! Just the other day I found myself telling Ryan how I don't really worry about Gavyn. I can see with his progress thus far that he should be catching up and leading a normal healthy life in a few years. It makes me wonder when he starts kindergarten if anyone will be able to tell a difference between him and his classmates?

So what has Gavyn been doing for the last 6 months?

I reread my last post and can not believe how much progress he has made in the last (short!) 6 months.
~ He has conquered the regular all four crawling for sure. He is pretty speedy when he wants to be. Of course that is saying a lot for my little turtle! If you put a choo-choo or Lightning some place in sight that he wants he can move.
~ He also conquered going up and coming down the stairs independently. He is still on his tummy with these maneuvers but again, who would have dared hope?
~ He is also cruising. This has been huge!! Once he started to pull up on the furniture we knew the day would actually come, something we were really not sure would ever happen. The first day he took a little side step while holding onto the couch my heart burst with gladness. It is amazing to watch him cruise around the furniture in the living room.

Shortly after the cruising started his PT had us get him fitted for leg braces. You may have seen Nevin's little feet braces that help his ankles stay straight. These are much larger and more supportive for Gavyn. They cover his entire foot and go all the way up his leg to his knee. They are lightning blue with white swirls and we call them his robot legs. :) The braces are something that get you looks when you are out and lots of questions. That is something I kind of hate. I understand that some people genuinely want to know and are curios but others are just sticking their noses in. I am trying my best to treat my kids as I would any normal healthy growing child and I don't like strangers pointing out their differences to dissect them for their own pleasure. OK, off my soap box! I actually love their braces. Barb - the lady who fits them is super good at her job and knows how to make a good foot/leg brace. She is efficient in our visits (which is very helpful when I have 3 kiddos with me), knows exactly what kind of shoes will fit over them and we only have to get braces once a year. Nevin's helped him immediately and he could tell a difference as well. He would get them for me in the morning and wanted them on. Now that Gavyn is up and going he is the same way. Every morning when we are getting dressed he will tell me, "Shoes, shoes, shoes??" It is such a blessing that they like them and don't fight it!

~ He's WALKING!! Yes, WALKING people!!! After the cruising started, the leg braces came in and he was just up more his PT brought a medical toddler walker for him. We were not going to push it with him because he usually needs to take baby steps with everything he does. There was something about that walker though! It did not take him long to figure out how to get up in it independently and start going. His PT, Adele, is still so impressed with him. Every week when she watches him go with it she tells me how she can work with kids for months to get them to do the things he figured out in weeks. A true blessing. One of my biggest prayers when he was diagnosed with hydro was for him to be ok cognitively. I knew he was not going to be an athlete, that he may not even walk, but I also knew that if his mind was functioning he could do anything. I can see every day with him that God answered that prayer. He is a smart little guy and always watching everything going on around him. And to be doubly blessed that he is walking is more than my heart can bare. He will be using the walker for quite some time and we still are not using it outside the house. Mostly because he does get overwhelmed with things and we don't want to take any steps back. I think we are getting very close to trying to take it out though. I want to get him in a large space and just let him go and go. I think everyone, including Adele has a goal for him, walk independently before baby Gideon arrives on the scene! If you think about it, say a prayer! Honestly I am just so thrilled any time he decides to walk independently is fine with me but that sure would help.

Those are some big mile stones to hit in 6 months. Looking at his progress over the last year it is almost like he was born last year and is developing on track. Hopefully by 3 he will be running and jumping. Right now I don't want to get ahead of myself. This year will bring many changes for our family and for each boy in his own time. I am just so glad they are my kiddos and I get to be a part of each and every one of their amazing journeys.

18 Months

I can't believe it has been so long since my last post! Can you even believe Gavyn is 18-months-old? I sure can't. Where did all this time go? I love to look at Ryan and be like, 'Remember last year when we would stretch his legs and arms and hope one day he would be moving more?' Now he is a crazy man! Ok, not really crazy but way more active/mobile than we hoped those first months. He is really crawling all over the place. I think soon he will move past the army crawl and onto all fours. He can pulls his knees up under himself and straighten his arms but he hasn't actually moved yet. He gets so proud with a HUGE smile and then sits on his butt. :) He has also discovered the stairs and my are they fun! He can't go up by himself yet but if you put a little hand on his butt he does most the work if not all of it. He is of course slow and steady, true to form but we are moving! The first time he did it we were all home and it was the most exciting thing to happen in our house. All the boys were excited and cheering him on. I tell ya, that brotherly love can't be messed with! He is starting to be more chatting and that is really good. We did line up Speech for him with First Steps and he starts next week. Just since he was evaluated about a month ago he is making more sounds/words. But I know how important early intervention is for everything and I would rather get him going now. Over all though we have no complaints. He just keeps moving forward and making progress and we just keep getting him all the help he needs.

Major Milestones

So blogging has gone by the way side because we are super busy and every time I sit down to blog all hell breaks loose! Right now I am just going to ignore it and get something up.

Gavyn is doing amazing and it is really exciting to see. A year ago we were not sure he would sit up, roll over, crawl, just be mobile in anyway. And some how this year right around his birthday the light bulb went on and he is determined to do amazing things and blow us all away.

In the last 3 months he has started to roll like a little pro. He can cross a room in seconds flat by rolling and scooting. We had almost given up on rolling after months and months of PT. We always knew he was making progress but it was so slow and at times did not seem to be moving forward at all. In March his therapist Adel told me she thought he was going to finally do it and the very next day he did! It was one of the happiest days at our house. To accomplish such a huge goal that would lead to so much more.

In the last month he started to scoot backwards, HUGE! We knew eventually he would figure out crawling but I had low expectations. It only took a couple weeks though and now we have an army crawler on our hands. It is seriously the cutest thing ever. The older boys never army crawled and I always thought it was cute when babies did it. The grunting that goes with it and the hard work is endearing. He is one tough cookie.

Now that we are mobile we are finding all sorts of interesting things to get into! I find him in my office opening and closing draws, pulling papers out, getting into the kitchen panty and dumping food out... It is so exciting to watch him do it I don't get mad no matter how big the mess.

We are making great strides and he is a cutie bug. I am so grateful for our team of people who help him every week. I don't know what we would do without all the support.

Hopefully my next blog will be telling about more amazing strides. :)

1 Year Ago

I woke up this morning feeling sick to my stomach. I laid there for awhile thinking it would pass. We were supposed to take the boys to the circus, I was going out for coffee later with a friend, church tonight. It was supposed to be a busy day. Instead I am laying on the couch feeling crummy. It made me think about a year ago. Gavyn was still in the hospital at this time. I remember this week too because all the nurses wore green on St.Patty's Day, John and Nancy took the boys to the same circus and we all came down with the same stomach bug. Weird huh? I mostly remember the day I had to come home sick from the PICU. That whole day and night the worst fear of mine was that something awful would happen to Gavyn and he would die without me there. That was one of the hardest days.

1 Year Ago Today III

I did not have time to write a post yesterday because it was a crazy day! Such contrast from a year ago.

Skyler went off to school in the morning. That has been such a great thing for him but I am also glad we waited for 4 year old preschool. Not only because it gave me more time with him at home but because of the crazy year we had and how much more crazy it would have been.

Gavyn had his 6 month visit with his nurse practitioner Neurologist, Tracy Moore. Thankfully Ryan was able to go with us and Nevin too! Everyone loves to see Nevin now at CG because of his thyroid. Any who... It was a very productive visit. Thinking of sitting in that PICU room a year ago, machines hooked up all around my baby, wondering what was going to happen and now...

She went on and on about his sitting, how well he interacted, clapping his hands ect. We talked about his gross motor delay and if he has mild CP, he could, probably does but there is no test, no for sure answer. We also talked about if you say he is at a 6 month level he is doing awesome. You have to cut off all the time he lost being sick and how long it took him to recover from it all. In most areas that is where he is at and we just have to go with it. We talked about when we he would get an MRI, what therapies to continue and possibly start, coming up doctor visits ect. Of course we even chatted about Mr.Nevin.

Before we left Ryan asked how he was doing, compared to other babies with hydro and shunts that she sees. She looked at Gav, looked at us, took a deep breath,
"To be honest... He is doing remarkable. Most babies I see who have what he has are not sitting up, they do not interact, they don't know what is going on around them. Obviously he has all of those things and for the rest we need to meet him on his terms."
Of course I cried. It makes my heart hurt so bad for those families. To have a taste of what they go through every day and know how hard it is. And also to feel a ting of guilt for the things we worry about because in the grand scheme of things he will probably be totally fine.

1 Year Ago Today II

Last year today we woke up in the hospital in Gavyn's room in the PICU. It had been a restless night. Lots of phone calls to family to tell them of Gavyn's latest condition. Posting on facebook to keep friends updated and texting back and forth. I had a sick feeling in the pit of my stomach all night long. It was hard to sleep. Not only all the beeping from the machines, the in and out of nurses and doctors all night long but the worry and darkness that had suddenly covered my mind. I was still in slight denial about everything going on though. We waited for a few early morning hours for the rounds to start. Thankfully we were the first of the morning and we listened in shock as the head doctor talked.

"I realizing that this is the worst day of your life. Your worst nightmare has come true. Do I think your baby is going to make it? Yes, I do. I think you got him here soon enough to save his life. Do I think he will have permanent damage? I don't know. But I do think he will make it."

I remembered my mind racing, it had not occurred to me that he might die. That was a prevailing thought for the rest of his stay in the hospital though. She was so very cold and blunt in her speech and lecture that she gave us. I was so completely grateful that that day was her last day shift round for his whole stay in the hospital. I am sure she is a great doctor but I still feel ill when I see her at Glennon.

It was mid morning before the neurologists made their rounds that day. We were anxious to speak with them about his hydro and their thoughts. Dr. Arun was much more encouraging about the situation. She knew there was a lot of pressure and swelling from the meningitis that would go down with the antibiotics. We needed to wait and see before jumping to major conclusions about his brain and the rest of his life.

In contrasts we spent about an hour last night with just Gavyn on the couch. For some reason he wasn't into sleeping and wanted to stay up late. I honestly did not mind. To sit on the couch and cuddle with him, remembering how a year ago I would go 2 weeks without holding him. To watch him covering his baby eyes with his chubby hands to play peek-a-boo with us. And to watch him drift off to sweet sleep. This morning we took the boys to the Science Center and played for a couple hours. This afternoon I spent in the kitchen making healthy food for my boys, glad to just be home, everyone healthy, in good care, growing and learning.