Wednesday, February 19, 2014

My little miracle man

     Wowzers. Isaac is already 7 months old!!! Where has the time gone?! I cannot believe how fast this has all flown by. I figured it was about time I updated the blogging world on how Mr.Isaac was doing. I feel like my life has been complete chaos (in a good way?) since having two kids, and I just have not been as dedicated to updating everyone as I had hoped I'd be. So I guess I will just pick up where I last left off.... Isaac was born and we got to come home from the hospital (yikes, did I tell you it's been awhile?!?!?! sheesh)...

     From the moment we came home from the hospital I feel like we have hit the ground running! Holy smokes we have been busy. Props to all you moms of multiple kids out there, it is tough work. I am going to be honest, the first 4-5 months of being home were really rough. Isaac had really bad reflux and would cry/spit-up ALL THE TIME!!! He was either awake and screaming at me, or asleep... and he is an AWFUL napper/ night sleeper. Most nights I would just end up half asleep half nursing him on the couch in his room. But sleep deprivation comes with the territory, that is just how having a baby goes.  I think why everything seemed so rough for the first little while was for a combination of reasons: I was trying to recover from a very traumatic C-Section, trying to build up my stamina to just do normal every day things that I hadn't done in months, trying to remember how to get back to normal life (is life ever normal?), trying to get back to work at the gym, trying to remember how to be a good wife and mother, trying to find some shred of confidence in my now post-baby/ bed ridden/ post-dual surgery body, but mostly was trying to figure out how to divide my attention between my two little boys. That definitely is something I am still trying to figure out. Forever, it was just Noah and I , and now we have another little man thrown into the picture that I love just as much. Anyways, those months were rough, but everyday I would remind myself how badly I had been wishing to be off of bed rest and to hold my cute Isaac and to play with Noah, and here was my chance, finally, so I wasn't about to complain.  Slowly things got better, Isaac stopped spitting up as much, and started sleeping through the night more, and we have slowly developed a routine that I feel allows me to give individual attention and love to each of my boys, one on one. It is and probably always will be a work in progress, but we're getting there!

    However, I'm guessing you aren't reading this to hear about my attempt to be a mother of two, or my weak-sauce try at potty training Noah, you want the update on my little miracle man, so I am here to deliver. I figured I'd go through each "category" of  the main doctors that we see at the Spina Bifida clinic so you can see the details of each area (I'm leaving out Physical therapy, Dietetics, Social Work, and the general Pediatrician). We've been to the SB clinic 3 times now, so I'll just give a brief update of each visit.

Occupational Therapy: The first visit with OT went pretty well. They asked about what bench marks he was hitting (and he was hitting all of them), things to look for etc. Second visit they showed me some rolling exercises, nothing really too exciting, except that he is still hitting all of this benchmarks, yay :) At this point he was only 3.5 months old. They asked me if he was sitting or rolling over yet? ummmmm... no. I know some babies roll a bit early, but seriously?! I am pretty sure Noah was 6 or 7 months old when he did both of those consistently on his own. When I said, "no", they told me kids with SB take a little bit longer to catch up. That made my blood boil. The last thing I want is someone telling my kid that he can't or might not do something because he has SB. You best believe I gave that OT a little "come to Jesus meeting" (as my mom calls it). Anyways, this last visit we had went much better. They were very impressed with him and how well he was developing. Before he was born they told us he'd probably have a lot of developmental delays... so far, he has none and is exceeding all of their expectations.

Neurology: Isaac has always had a big head. The concern with that, is they are worried that the Hydrocephalus (fluid buildup in the brain) could return. If it ever would come back, they said it would be within the first 6 months of life. Those 6 months I was extremely anxious. Every appointment they would measure his head and it was just getting bigger and bigger. Finally,at Isaac's 5 month checkup, the doctor saw that his head size had come off the charts and recommended that we get an MRI up at Primary Childrens. The neurosurgeon from PC called me and asked me a few questions about Isaac... was he having developmental delays? Was his forehead protruding forward? Was his anterior fontanel (soft spot) bulging? I told him he didn't have any of these things, and that I thought he just had a big head. The neurosurgeon sounded less then convinced and told us we still needed to come up for the MRI. So Dante and I went up for our appointment, and were dreading having to do an MRI. I was more mad than anything, I knew Isaac was OK, and felt like the MRI was not needed. Thankfully, when the neurosurgeon came in to see Isaac, he was beyond happy at how well he looked! He said that he was doing great and didn't need an MRI after all, he just had a big head...... hmm well I am pretty sure I told him that, but never hurts to have a triple opinion, right? Anyways, at our last visit to the SB clinic, I am pretty sure the neurosurgeon was in there for 2 minutes, tops. He said Isaac is, and I quote, " A SUPERSTAR", and he couldn't be happier with how well he looks and is doing. Booya. We usually go back to the SB clinic every 3 months, but he said that Isaac was doing so well that we didn't need come back for another 6 months. Hallelujah!

Orthopedics: Isaac had gotten his left club foot casted and we got that all squared away. He even had to have his Achilles Tendon snipped to allow more flexibility in his ankle. Poor guy. That didn't seem to bother his too much though. After we were done with casting his foot, he was moved to these special shoes that has a bar in between them to keep the left foot from moving back to club position, and to help the right foot (a flexible club foot) to be corrected. For 3 months he wore the shoes 24/7. It was rough some days, his little feet would slip out of the shoes, or they'd get hooked on something as we were walking past it, they were wider than his carseat, so that was just uncomfortable, and he so badly wanted to turn to his side to sleep but couldn't because he was wearing these massive shoes with a bar in between them. Luckily though, at our second visit to the SB clinic the ortho surgeon told us he looked so good that he only has to wear them at night now! That has made things significantly easier for Isaac and I. At our second visit, he also told us that both hips were still out of the socket and that we will probably be looking at hip surgery soon. At our last visit though, he looked at Isaac's hips and said it seemed like the right hip was now in the socket! What?! How amazing is that? Our bodies are pretty rad. Anyways, we did an X-Ray to check out where his hips are at, and are waiting to hear back if both hips need surgery or just the left hip now. Hopefully we will be doing surgery ASAP.

Urology: This is where it gets a bit heated. From day one the Urologist has been trying to get us to catheterize Isaac, and if he really did need it, of course I would, but here's the thing, he doesn't need one. They did an ultrasound on his kidneys and bladder in the hospital when he was born and everything came back normal. Then we went to the SB clinic when he was a month old and they told us we needed to be cathing him at least once a day. When I asked why, they told me, "just in case he needs it." When I asked him if there was anything pointing to him needed it, they responded, "no". So needless to say, I did not allow a catheter to happen. At our next SB clinic we did a bladder pressure test. Essentially they filled up this bladder with fluid and watched it empty to make sure there wasn't any back flow, or reflux. Once again, everything came back looking great, but then they still told me they thought it was a good idea to cath him once a day. When I asked them why, they told me because just in case he needs it in the future then he'll be used to it and they thought it was a good idea. I then told them that I didn't care what they thought and that it wasn't going to  happen. If there really was a need, of course I would jump at the chance to help Isaac out, but when they told me it was just an "in case" thing and not a NEED, this mama bear came out. Cathing Isaac would mean that he would have to go on regular anti-biotics since we were putting and foreign object into his body every day, which can also cause internal damage when done that often,  and that I would have to do this to him every day. HELL NO. Is what I told them, with the agreement that we'd do yet another kidney and bladder ultrasound when we came in again. On Tuesday we did the ultrasound, and everything came back looking beautiful. Part of me wants to rub it in the Urologist face, he really pissed me off  trying to push something on Isaac that he clearly doesn't need. I know he is just trying to be cautious,they usually don't have kids that come through the SB clinic that don't need a catheter, but I felt like he over stepped his boundaries. But  in the end, I am mostly just grateful that we have had all of these tests to reaffirm how well Isaac is doing and the miracle that he is!

All in all, Isaac is amazing. He has exceeded every ones expectations by a mile. I could not be more grateful for the opportunity we had to do the surgery and for the incredible outcome it has had. I know I say this in every post, but it's because I truly do feel complete gratitude and debt to my Heavenly Father. I know, without a doubt, it is because of His helping hand that Isaac is such a miracle. I love that little boy so much and am so glad I get to call him mine. He makes our home a better place and has taught Dante and I so much. I can't wait for him to continue growing and to see his little personality come to life more and more each day. I LOVE watching him and Noah interact. I can't wait for them to run around and play together. A lot of you still ask me about Isaac and tell us were still in your prayers, and we so appreciate it. Thank you for all of your continued support and love!