18 Month Check Up (a little late!)

Callista had her 18 month check up today. She is 29" long now, and weighs almost 22lbs. I am happy to say she has grown! I was a little worried about her weight, since she had such a rough time after her surgery and has been consistently puking for quite awhile. Apparently it isn't having an effect on her gain! She actually talked to our pediatrician today for the first time, even though she's been babbling for months. Annnnnnnnd....we finally got a prescription for HKAFOs (Hip, Knee, Ankle, Foot orthotics). Maybe we can finally get this baby practicing her standing. Our stander is still in process, but we made some progress with billing this week: one step closer!

Standers help our little ones stay upright, encouraging bone growth, better circulation, healthier digestion, and of course, it helps them finally see the world the way everyone else sees it! I am looking froward to her being able to be at a higher eye level and interact more. It will come with a tray so we will be able to sit toys in front of her.

Next Friday, Callista will go to Myelo clinic. This will be the first one I have ever missed. I am sad, but daddy will be able to handle it (with the help of our nurse, everybody needs food and a bathroom break at some point!). I hope they see the massive amount of progress that we see after her decompression surgery. Sure, she is no where near where she would be if she was a typical child, but the girl feels better and that is what matters.

We still have no news from our Homecare Waiver reassessment, so for now we are going with "no news is good news". Our documentation shows her need, now we just need to get the approval. Keep praying!

As for mommy, the new job is going well. I like being able to be home with Callista a lot sooner and the financial aspects have been a blessing for us. A change in insurance *should* make the world of a difference, but we won't see the change for another few weeks. I really had forgotten how awesome it is to work with children directly. It's certainly a lesson to be that all you have to do is trust and ask, and God will give you what you need. Even if it takes his sweet, sweet time doing so. :)

I will update after clinic next week. No MRI (as far as we know!), but she does have a renal ultrasound. They've been stable for a year, we aren't expecting anything new from this. We are getting samples of a blended diet formula though! Plan #987 in Operation: End Vomit!!

Move It Move It!

Our little princess is one tough cookie! I cannot imagine how she felt before decompression #2. The progress we have seen has been amazing. There's not really any other word for it. Even though she does not get another MRI until December, I already know what it's going to say in my heart. I know the syrinx is either gone or shrunk significantly. We have a NEW KID. As I write this, she is sitting in her bouncy chair pressing away on her musical flowers. Most parents would be ready to smash the thing by now, but hearing that sound (albeit annoying as it is!) means so much to me. Because a month ago she could have cared less. She didn;t want to play with toys, she didn't move her arms. Yet here she sits, twirling the flowers, making them go, and entertaining herself for the first time in her life. She is trying her hardest to sit up even though she still has another week to go before she's allowed. And best of all, we see leg movement all the time. Coming from little to no movement to frequent kicks and wiggles pretty much makes me cry. No lie there. I had almost resigned myself to the fact that my daughter would never walk, even a little. It doesn't even really matter whether she does or not as long as she's happy and independent. But this gives me so much hope for her mobility. I cannot wait to get her braces so we can really see what she wants to do. The food trials are going so much better than we could ask for. She wants more, more, more! Her five trial bites are never enough for her. And her language is improving too, she is developing new speech sounds that we've never heard her say before and she even throws me a bone now and then by saying mama. Occasionally. Dada is still the word of the day, every day!

Mommy is back to work and while I am sad to leave my baby girl, I am happy for all the blessings my family has received over the last couple of months. So many good changes have happened and we're looking forward to the first day of the rest of our lives as we work to get back on our feet. I don't want to jinx it, but we are starting to see the light at the end of the tunnel.

Nom Nom Nom!

For the first time in a very long time I can say we had a great result from an appointment. Callista is healing up nicely from her decompression but still has to wait until her six week mark before she can start working on building up those neck muscles again. We're going to try to go back to therapy two times per week as long as Callista stays as happy as she has been.

The interdisciplinary feeding clinic was a huge success. We met this team for the first time on Thursday and already they've been more help than anyone else regarding Callie's GI issues. The doctors on the team agree with me that there must be something else besides reflux that is contributing to her excessive vomiting. After over a year of hearing there's nothing else we can do besides surgery they told us there are several medications that could possibly help. We have not just one choice, but many choices if this first med doesn't help. I couldn't believe it! The feeding team evaluated how Callista can eat by mouth and gave us suggestions on starting oral food as well as a referral to speech therapy. Not only can speech therapy help with oral motor skills, but maybe our baby will talk soon! I still have to schedule the speech evaluation. I know it's one more thing to add to our plate but we'll do whatever it takes to make her successful. We will also go back to the feeding team once every 3 months for them to reevaluate and give new suggestions, as well as see their therapist once a month for consultation. At least it's a change in scenery since this one is in Dublin rather than NCH.  Miss Callie is also very happy with this visit because she gets to try real food three times a day! She may not be completely sure what to do yet, but she sure enjoys the taste.

We have a GI appointment tomorrow and I'm guessing it will be our last. They've been less than helpful and it will be one thing for us to eliminate trips to Columbus for. The only reason we are going back this time is for follow up from her gastric emptying test. Wish me luck and patience...

What a GREAT Day!

Callista's Second Annual Benefit was a huge success! We had a great turn out and raised an awesome amount of funds. We've got two walks/runs we will be doing soon so our team is set. Plus, don't forget to check out Socks 4 Surgery, Gracie's Gowns, and Team Iron Aiden on facebook, we will be supporting these organizations by sponsoring child gifts. We also will start the planning stages of home renovations for Callista. Since our home is two story, it's not conducive to her future wheelchair. An additional bathroom with a wheelchair accessible shower and sink as well as remodeling the room attached to the garage are in the works! Our goal is to make our home work for our daughter and to encourage her independence as much as possible. Anything she can do for herself is what we strive for!

I cannot thank our supporters enough for all of the hard work that went into making the benefit a success. Those who donated items, money, time, and prayers were an integral part of why this fundraiser worked out so well! Everyone who came said the food was delicious and they had a lot of fun. There were so many auction items and fantastic prizes to give away. We could not have asked for a better day. I hope to post pictures from our "photo booth" to her facebook group soon.

Thursday is a neurosurgery check up to make sure she is healing properly and to get cleared for therapy. There was a surprise call today from feeding clinic and they had a cancellation so we will be seeing them on Thursday also!

Home Sweet Home

It is truly a compliment to be trusted by your child's doctors. It's nice to hear from professionals that you're doing a great job and they consider you "educated" parents. We finally got to come home today after spending a week in the hospital. Even though Callie was still throwing up, they had such faith in me as a parent and caregiver that they let me take her home anyway. I am so glad we did because she has been doing great. Maybe she just missed her special chair! Me, I just missed my shower, bed, couch, TV, dog, couch, etc. Okay, I think I missed a lot more than her... Mostly I think we are both looking forward to a night of uninterrupted sleep.

We still have to work on getting her feeds back to baseline but otherwise she has made a super recovery. I was worried about her neck strength after such an invasive procedure but she's already moving her head and trying to hold it up. She's not allowed to do anything strenuous until we have our follow up appointment next week, but I'm so proud of her and how resilient she is. These kiddos go through so much and come out smiling, it's just amazing.

Before leaving today, we had "the talk" with her neuro team about transfer of care. We've made a decision and I pray it's the right one. After next week, we will be under a new neurosurgeon and the thought makes me quite nervous. She will have another sedated MRI in 3-6 months to check on the status of her syrinx. Our current doctor thinks this should take care of the issue but if it doesn't, we will come up with the next course of action which could be tethered cord release or shunting her spine (no thanks to either of these, please!)

I know it's not a very interesting blog post, but I wanted to update everyone on how she was doing. There wasn't enough sleep in the world for my brain to work any harder.

Pain, Pain, Go Away!

Callista had her second decompression Wednesday. If you know Callista, you know this came with some drama. What was supposed to be a 5-7 hour surgery turned into a 14 hour surgery. Nothing necessarily went wrong in the surgery, it just proved to be a little more difficult than initially expected.

We brought her in at 6:30 for surgery prep. By 8:30 they took her back for anesthesia and to place her IVs. At 9:30 they called out to tell us they were struggling to get lines in and the surgery still hadn't begun. Around 10:30 someone came to tell us they started shortly after our last phone call. The nurse was so good about calling us with updates every hour and a half or so. But after the seven hour mark, it was a little stressful waiting on those phone calls. Each time we were assured everything was going smoothly, the doctor was just taking his time finding the right placement.

Finally around 11:30 the surgeon came out to say it was done and he thought it went well. I am forever thankful it was HER surgeon that worked on her, I cannot imagine a new person taking on such a huge procedure when they did not know her. Dr J. claims this was Callista's going-away present to him. He had to remove bone that had grown back from her surgery when she was two months old. She also had a lot of scar tissue which took some time getting through. He could not pinpoint the spot where the fluid was blocked so that also took more time than necessary. He removed a cyst she had in her brain that had been there since her last decompression as well. Finally he was able to place the stent and close.

She had a CT scan shortly after surgery and it showed the stent was in the right place. They kept her on the breathing tube since she had been under for so long and it was 1:00am. She was able to be taken off the next day. She had a fever all day Thursday so they pumped her full of antibiotics to fight off any possible infection. It finally broke later that night and she was feeling a little better. Her pain was controlled okay until this morning.

Somehow her pain meds were not given around the clock and she was about two hours late on one. She woke up screaming in pain, she held her breath four times, and scared a nursing student to death. Once she got caught back up, she's been happier today. She is awake more and trying to talk and play, but wears out easily. She enjoyed sitting on Papaw's lap today after several days of not being able to be cuddled. She's got pressure ulcers all over the sides of her face from being in the halo for such a long time. She also has a lot of swelling from the surgery and fluids she's been given. We tried to start her food but she couldn't handle it. Hopefully tomorrow is a better day! We hope to be discharged by Monday but she has to eat and have adequate pain management with oral meds.

We won't know if this surgery did what we needed for several months (as long as 4-6 months). The MRI yesterday showed smaller ventricles, maybe that's a good sign!

Eight.

Eighth time's a charm, that's how the saying goes, right? Third time, you say? We missed it!

Callista will have her eighth surgery on the 17th. It will be another decompression surgery. She had one at two months old and it is the most serious surgery she's had other than the fetal surgery. Needless to say I am one nervous mother. Last time it took about six hours, but they did a bronchoscopy with it. We don't know how long this one will take. I did my best to find pictures that (sort of) explain what is going on with Callie's brain.

Callista's syrinx is much longer than in this picture, it travels pretty far down her spine. A syrinx is when there is spinal fluid in the length of the spine in a space it isn't supposed to be. The larger blue spot in this picture is the syrinx and the skinny blue line is what it's supposed to look like. On her MRI, there's a big black spot that points to a blockage, possibly caused by scar tissue from her brain being so compressed when she was born and the first decompression surgery.

This picture is an in depth look at what a decompression surgery actually does. Hers won't necessarily be the "textbook" surgery like this shows since it's the second time she's been through it. We are so lucky in the fact that her neurosurgeon rescheduled another surgery so that he could do hers and still be around a few weeks after before he moves to another hospital out of state. I am so relieved. This procedure is a huge undertaking and I wouldn't trust anyone else to do it as well as he will.

His plans are rather loose since he is unsure exactly what he will find once he opens her up. The tentative plan is to use the same incision, perhaps lengthen it to adjust for growth. He will open the dura and look at the scar tissue to see how much he can remove. Any bone regrowth from the last surgery will be removed and depending on how compressed things look, he may remove bone to widen the opening. He does not think he will need to remove more bone but it is still on the table as a possibility. Then a stent will be inserted to bridge the gap between her ventricle fluid and that "black spot" so fluid can flow freely through the spinal cord.

In writing, it seems straight forward, but there are many unknowns until he can see it. There is also a slim chance that this repair could also help her vomiting issues but we can't be certain. We are wishfully thinking it helps though!

Please pray for my sweet little girl and our family that we can get through this smoothly and have a quick recovery. It's such a major surgery that we hoped we'd never have to go through again.