So Much To Catch Up On!!

Are you kidding me? How PRECIOUS is this little boy!!

I need to start by saying this is a long post. I just couldn't shorten it, so I'm sorry!

Hi everyone! Whew, it's been a crazy few months... well, let me back up... this last year has been crazy! I feel like since we had Deklan, things just got super busy. Just weeks after he was born, Teda started kindergarten and Dane started preschool. That would seem like a "break" since they were both in school (Dane even if it was only a few hours... with Teda being tardy almost every day- oops), but it totally wasn't. I had to get them all to school by 8:30am (20 minute drive there and 20 min back to our house), and then turn back around and come pick up dane by 11. And Deklan had to eat every few hours, and it would take him a good 30-45 minutes to eat out of his haberman bottle. Sweet boy. The first year of his life has been hectic, that's for sure. I was a hot mess most of the time. My memories of last year are pretty blurred too because it was "go mode". Just do what you have to do, because you can't stop or change it. So that's what we did. And really, that's what we continue to do. This is the season of our lives with 4 kids under 6. A fun season, but a tiring and busy one too. And I can see God's Hand all over it- it's been amazing to watch Him continue to work in our lives.

Would I change any of it? Of course not! I know that God had this in store for us, and I fully trust what His will is for our lives. And looking back, it really went fast. I never would've said that last year, but it's true. It's flown by. And now Deklan is just about 18 months old- how did that happen!? I'm anxious and excited to share with you how he's doing, and the different therapies we're enjoying with him each week.
So let me take us back. His surgery to have his palate closed up (called a palatoplasty) was in July 2011. He did awesome, he even kept his "no no's" on just fine, and slept pretty well after the surgery too. He began making a "da" sound the week after surgery, which was a huge milestone for him. He started crawling just before his surgery, which was a big deal too. He turned one year old!! And when we fed him, the food and drink didn't come out of his nose, which was super exciting too! He has always been a happy kid, but I think he was grateful that we had this done. :)

Then we went in for his 1 year well check with our pediatrician, and he said he was looking pretty good, but that he wanted him to be evaluated due to some delay in his milestones. He said that he may come back fine and not qualify for anything, and then at least we checked. But if we didn't, he feared that each time we were in for a well check, we'd say- he's right there, almost about to _____ (that being whatever he should've been doing for that age) He was barely crawling at the time, he wasn't pulling himself up on anything, he wasn't saying anything, wasn't pointing to anything (I guess it's a big part of communication- they do that first, then start talking), barely knew who we were when we'd say "where's mammy?" or "where's daddy". He wouldn't know to look at us. He was saying "ma", which I was sure he meant mom, but he'd use it out of context and not at the right times.

Our pediatrician also wanted us to take Deklan to see a geneticist, just to rule that out. The reason is because he was born with both a cleft palate and he has webbed toes on both his feet. I guess those two things are enough to raise suspicion. So we did that. We had blood drawn, and we're waiting for the results, if any. The geneticist, Dr Aleck at Phoenix Children's Hospital was very kind and knowledgable. He said he just wanted to rule a few syndromes out, and wanted to test to see if there are any chromosomes missing or altered. So we're about 3 weeks out from finding the results of that. He didn't have us schedule a follow up though, so I think he was hopeful that they wouldn't find anything.

Anyways, we made the appointment to have him evaluated for developmental delays, whatever that meant. I had no idea what to expect. It turned out to be a great experience. The gal who evaluated him was a mom of one of the swimmers on the team that Zach coaches! So that helped a lot, because I could express to her that I was a bit nervous and wasn't sure how this all worked. She was really helpful. She works for an organization called UCP of Arizona (United Cerebral Palsy), and is what's called a service coordinator. She asked me about a bazillion questions all about him, about my pregnancy, all the way up until now. Even things like, when he looks in the mirror- does he know he's there? Normal things like when did he sit up, crawl, what is he saying, noises he's making, etc. Other questions like can he hold a toy and then transfer it from one hand to another? Many of these, I wasn't sure of the answers! I felt like a bad mom that I didn't know, but some of those questions are not things I think I wouldv'e even noticed with my first child, let alone my 4th. So I had to call her back with a few of the answers as I watched him for those things she was asking about.
A few weeks passed, and she sent me a report with her findings. He was coming up at about the 6-9 month mark in a few areas. And even earlier than that in some- in speech he was more than that but he'd just had his surgery- so we knew he'd be behind in that. So he qualified for a speech therapist and a physical therapist to come to our home once a week and work with him. Which worked out perfectly because the thought of having to take all the kids to a therapy place just almost was enough to make me want to crawl back in bed for the next few months.

We started with physical therapy, and guess what? God was involved here too! Our physical therapist happened to be (and she still is) Zach's boss for the swim team! She started the team as a mom who wanted to see a team developed in her community, and she made it happen. She's amazing, and I was SO excited to see her at our door! So again, I'm super comfortable with her, she's an incredible therapist, she LOVES what she does, and she's very very good at it! So I'm comfortable sharing with her how things are going with Deklan, my worries and concerns, and I know she's going to give me a straight and honest answer about what I should do, or where I can go to find what I'm looking for. She immediately took to Deklan, and he did too. How could anyone not take to him? :) Anyways, she started with him at the end of August, and she still comes over once a week to work with him. It's kinda funny because it's just like a personal training session at the gym. He doesn't enjoy some of it because it's hard work, but she makes it fun. He gets tired pretty easily, which is normal for him. He has what they call low muscle tone. So he tires easily, has weak muscles, and doesn't have much endurance. So after about 10-15 min of working with her, he's squaking at her and wanting to stop. He's come a LONG way though because he can go much longer now. When we first started with her, he was crawling, but from what she said he was a lazy crawler. He would do anything he could to keep from using his arm muscles. And he loves to do what's called a "W sit" where you put both legs behind you with your knees in front. It's terrible for your hips, but very easy to do if you have low muscle tone, and it doesn't require you to use your core, which in his case is pretty weak.

So she really has been amazing to help wake up his core, and show him the right way to crawl (I know, who knew there was a right way? But yes, there is). She has given us functional activities to do with him during the week to help strengthen his muscles too, and I have to be honest- I don't always get those done.
She sent us to an opthamoligist to be sure he is tracking well, because he's super clumsy, and often misjudges a table, etc and will fall and bonk his head on the floor, table, chair, etc. The dr. said he's tracking well (which is awesome) but that she saw a red dot type spot on one of his eyes that is probably nothing but we have to go back in 6 weeks for her to re-check it. Good grief, another wierd thing going on! She said it could just be a blood vessel, but she wants to rule out the rare possibility of a rare eye disease. Nice. Then she said don't worry. Hmmm, she doesn't know me well. But really, I've been okay with it. I figure if it's something- then I'm grateful that we went in when we did. If it's nothing, I'm grateful that she was so thourough. God is good, and His plan is His plan. It is what it is, and I'm just going to do my best to enjoy each day!

Anyways, our PT (physical therapist), Jen, has done TONS of squats with him, and it was amazing to watch those pay off when he started standing in the middle of the room from a sit. He would just get to his knees and squat right up into a standing position! She taught him how to cruise furniture, how to side sit (and now when we say "fix your legs" when he's w sitting, he fixes them- pretty cute), and how to walk. She's been working with him on his balance (he curls his toes and always seems a bit off balance, even when standing still), and now it's trying to work with him while walking outside with shoes on. Seems like a huge hurdle to cross because he looks like he's never even walked before when he's outside on the rocks with shoes on. Which brings me to another thing. Deklan is what is called hypo sensory. It means he's receiving the same amount of stimulation as another kid, but his response to it is delayed. More about this to come in another post because this is getting super long! I'll also post about Deklan's speech therapy in another post.

So I have to say all in all, Deklan is doing amazing. The changes we've seen in him since he's started his therapies is incredible. He's talking more than he has, walking, using sign language pretty well (for things like more, thank you, eat), and he just loves the personal attention he gets from his therapists. And all three of them just love him! They say he's a bright spot in their day, and that he's just the sweetest little boy. They're right! He's funny, he's snuggly, he LOVES his brothers and sister, he lets them just carry him wherever, he gives the best kisses (open mouthed of course), and it's so fun to watch him start to talk and communicate with us, to listen to him giggle so hard when he's tickled, to watch him climb on the couches, and even to watch him open doors and get into stuff (I never thought I'd enjoy that! :)). He's just a joy all around!

I have struggled a little with all this because something I've always had a hard time is what others think of me or of my choices or my family. I know it's not something I should worry about, but I still struggle in it. Today I was talking with our physical therapist about how I've been feeling discouraged and doubting myself as a mom and our choices to go ahead with these thearpies. I think the reason is because I wonder what others think of it. It's hard to explain why he needs these therapies. Most people look at it like, he's a kid, and he'll catch up. Yes, he is a kid, and he gets to be a kid. In addition, he gets to have 3 more people in his life that are "in his corner", working with him, wanting what's best for him, helping him to achieve so much more than if we never knew them. We are learning so much from them, we're being given activities to do with him to help him develop, and it's working. If I put him next to a one year old, and who just started walking- most would be more sturdy and stable than Deklan is. That's not to say that's a bad thing, but it's something that deserves some attention to find out why. So that's why I'm grateful for this stage we're in. And grateful to have people in his life who are knowledgable in what they do, and are rooting for him to grow and develop! And I don't need to worry about what others think, whether they think this is necessary or not. We know our little guy, and then on top of that if we're being showed by professionals in these fields that he needs this "help" to learn to develop, then I'm all for it. Plus, Jen told me today that this age that he is is critical for him. It's now and then again in puberty that his brain will be able to soak up all this- so while he's a sponge, we're gonna get him soaked! :)

Three therapy sessions per week is a lot, and it's time consuming and hard at times, but it's worth it. He loves it, and I'm thankful for that! God is definitely teaching us all patience, love, and realizing He has a plan for all our lives. I'll be posting about his speech therapy and occupational therapy soon too. I just wanted to help explain a little more about what has been going on with him, and how he's doing. Sorry it was so long!