Thursday, September 16, 2010

Batter up!

This summer William started T-ball. This was a first for Will. He is four, so he was part of the 4 and 5's team. Most of the kids on the team were getting ready to start kindergarten this fall, so he was one of the youngest on the team. Will was very shy and did not want to do much the first day, so Matt ran along side him everywhere he went. He had two games a week and by the second week he was doing MUCH better. He needed a little encouragement still, but we were able to cheer him on from the cheering section :) By the end of the season he was by far the most improved out there. He ended up having a lot of fun, loved bating, loving running for the ball, and loved playing with the other kids. He had lots of fans too. Matt's parents, my parents, Will's great grandma and grandpa B., Unlce Joe, my friend Megan and our friends Bob, Alisha, Bre and Haylee all came out to cheer him on several times. We were so proud of him for going to his games and having fun each week. He is getting ready to start soccer on Saturday and is really excited about it. I can't wait to see him in the high socks, shin guards and cleats! He is going to be so cute! Here are some pictures from his t-ball games this summer.

Monday, August 30, 2010

Looking back at our summer...starting in May

Spring and summer have gone by and I haven't posted anything. I thought the best way to start would be to go back in time and share a little of what we've been doing the last several months. I'm going to start all the way back at the beginning of May when the kids and I went to Texas to visit Aunt Rachie. I really wanted to be with Rachel on May 1st which marked the one year anniversary of Justin's death so the kids and I packed our bag and caught a flight to Austin Texas. Matt had to stay behind due to work, and I was a little nervous about taking both kids by myself on a long trip. Thankfully, it was by far the best time we've ever had in Austin. Rachel was very happy to have us there and I was so happy when she told me that was the happiest she had been in the past year. I really wanted to go to distract her and just be with her. We went to San Antonio for a day, we went on a "drive through Safari" and to a cave. The kids had a blast with their Aunt Rachie. When we went to the cave I wasn't really sure what I was expecting, but as soon as we got out of the little train car that took us down into the cave, I started asking my sister why I agreed to do this. I started thinking what's going to happen if the lights go out in here (believe it or not I'm still scared of the dark at 30, pathetic, I know) or what if it collapses and we are stuck in anxiety level was a bit high for the first 10 minutes. The kids did great. At one point towards the end of the tour they turned all the lights out for about a minute and a half so we could see how dark it was in a cave. I thought this was a horrible idea, but nobody cared. The lady turned the lights off and I was sure the kids were going to flip out, but instead they didn't make a sound. I was begging them to cry or something so they'd turn the lights on as I clung to them and my sister. My sister loves making fun of me for this.
The Safari thing was so much fun. My sister and I laughed so hard during that drive. It was the hardest I think both of us laughed in a long time. They gave us food to feed the animals and of course all the signs say to drop the food on the ground but I don't think there was one animal that didn't shove his head in the car waiting for food. One of the Zebras put his head in the car, grabbed my bag right out of my hand and ate the whole thing including the bag! I screamed, my sister screamed and then the kids started screaming 'roll up the windows!" It was hilarious. The Ostriches were actually really scary too. These HUGE birds (3 of them) walked right towards us as we drove up towards them and came right up to the window. They stuck their long necks into the window and that actually freaked me out as well as poor Kaela who hated every moment of this. I thought it was a good idea to try and convince Rachel into having one of the Ostriches feed from her bag and she agreed when one came up and pecked the heck out of the bag. I wish I would have had it on video because my sister literally jumped from her side of the car into my seat! It was the funniest thing I've ever seen :) Kaela literally hated every moment of this drive, but the rest of us had so much fun.
I am so glad we were able to spend this time with my sister and so glad we were able to give her a happy long weekend when she's had so many bad ones over the last year. We continue to miss Justin every day and I know my sister struggles every single day so I just have to do my part in taking care of my little sister now. We can't wait to go back to see her hopefully soon.

Tuesday, May 18, 2010

Kaela's progress

Once again, I've neglected the blog. Life has been so incredibly busy the last three months that I just haven't found time to get on here and post anything. A lot has happened since Kaela's fusion and decompression surgery 12 weeks ago. She was put in the halo and was scheduled to be in it for 3 months. She was due to come out of it the first or second week of May. Unfortunately, we had a lot of issues with the halo, or rather, Kaela had a lot of issues with the halo. Her Orthopedic surgeon and Neurosurgeon both told us that her bones are much different than the average person, or even most kids with dwarfism. They had never had such a problem putting a halo on someone as they did with Kaela. Her bones are very soft, so when they originally put the halo on they tried it out in many spots before finding the right spot. The first several tries ended with the pins slipping through the bone. They also had problems with the pins clicking into place, so they didn't put much pressure on them (to avoid having them go through her skull). About 5 weeks after surgery Kaela started to scream and cry that it hurt every time we put her on her back or sometimes when she sat up. It was horrible hearing her cry out that we hurt her. We knew something wasn't right, so we called and scheduled an appointment to see the halo docs. It turned out that she had 2 loose pins, both on the left, one in the back and one in the front. Kaela had 3 pins in each site, for a total of 12 pins. Her Neurosurgeon felt okay taking one pin out of each site since she had so many pins in already. They took out the two loose pins and we went home. She was feeling much better the next day having those loose pins out. About a week and a half later we went in for a regular check up with the halo docs and found out that she had several loose pins. They can't leave less than two pins in each site, so a lot of times if one comes loose they just re tighten it, or put another pin in. Because of the problems with Kaela's bones already, they didn't feel comfortable adding more pins or tightening existing pins. Instead, they decided we should just take the halo off. They felt that having had the halo on for half of the desired time was good enough for them. They took the halo off in less than 10 minutes, while Kaela was awake. She was NOT happy about that, but the pins were all so loose that it wasn't as bad as if they were tight. If the pins were tight, they would have put her under general anesthesia to take it off. Kaela has been a MUCH happier girl since the halo came off and is back to her typical self. Even her Neurosurgeon commented on how different she at one of her appointments. With the halo on he'd come in and she would be very quiet on my lap and just overall not happy. This time he came in and she was chatting up a storm and let him pick her up and put her on his lap with no complaints. She told him about her stickers and everything.She was in a neck brace for a couple of weeks, but since then she's been free of everything. We have gone in for several check ups and xrays since it came off, and so far everything is doing just what it's supposed to do. The last visit, just about a week ago, they said it looks like there is some bone growth where they did the fusion. This is great news. It's healing up from what they can see. She has an MRI in 2 weeks just to confirm that it's all healing well. We are so happy that with all the problems and complications, it all turned out okay. I was so worried when they took the halo off early that they'd have to re do this surgery because she wasn't secure. So far, there's been no concern for that, which is wonderful!Kaela's back to bossing everyone around and running the show. Sometimes when her and William play I have to tell her to stop throwing herself on the couch, because I'm so worried about things staying in place, but it doesn't seem to faze her at all.

Thursday, February 18, 2010

Kaela's first surgery

It's been just over a week now since Kaela had her fusion and decompression surgery. She's doing really well considering all that she has been through. They fused Kaela from occiput (base of the skull) to C2 and did the decompression by shaving down the back of C1. Her neurosurgeon said there is a very obvious indentation in her spinal cord from C1 pushing into her cord, and that once he did the decompression they could tell that C1 and C2 were very unstable, so it's a good thing we did this surgery now. We knew before going in she had spinal cord damage and from the pictures of her CT and MRI that C1 and C2 looked unstable, but it's hard to tell just how bad anything is until you get in there and look at it. They placed some hardware (screws and rods) as well as a bone graft from her right hip to fuse it. They were also able to use some of the bone from the decompression of C1 in the fusion. The halo is placed on before they even start the surgery. This took them almost 4 hours! Bones in people with MD (as is the case with most forms of dwarfism) are very different, but also have a different texture to them. Her forehead has a ridge that sticks out a bit and they had a hard time finding the right spot to place the halo. They also said her skull is very thin, so we have to be extra careful, as in no falls. They put a total of 12 pins in her skull. If you are not familiar with this, that's a lot. In an adult they typically put 4. In a smaller child they tend to put more, maybe 8...Kaela, again, has 12!! They are a little worried about the possiblity of infection because she has so many pins in, but we are going to hope for NO problems. More pins, higher risk for infection. We have to clean them once a day, which is actually not too bad. I was worried about this part, but for me, it's not too bad. Kaela on the other hand does not enjoy this. It's 50% hydrogen peroxide mixed with 50% saline solution, so it probably stings a bit. William likes to tell us every night that this hurts Kaela and we should really stop doing it. Such a good big brother. We just tell him that it probably doesn't feel the best, but it's to help Kaela from getting sick, so we have to do it. The next thing he usually says is "well I don't have to do it, right?" Poor kid is all worried he's next.
Kaela's surgery took just over 7 hours total. We were able to see her about 9 hours later. Seeing her for the first time was hard, because she really didn't look that great. She was VERY white, bloody and incredibly puffy. She was also hooked up to a lot of things, which was probably good! She touched at her halo a few times, but we just kept telling her that it was okay and not to pull on it. I was really worried that she would be really angry and tug at it, but she actually did really well...of course! She will have to wear the halo for 3 months.
Kaela was sent to the PICU the night of her surgery and was sent to the regular floor about 24 hours later. Increadible! She didn't move or want to move a whole lot during her stay in the hospital. Although she did better each day, I think she was still having some pain and the halo is very top heavy. They brought her a wheel chair and I was able to take her for a walk on the 3rd day. She hated getting in the chair, but was happy to go for a walk. Kaela's surgery was on Tuesday and she came home on Friday! Again, really amazing. She was so happy to come home. We dopped her up pretty good on meds before moving her around to bring her home, so she was very happy. She was on a constant morphine drip from Tues-mid day Thurs. and after that just took oxycodone as needed by mouth. She was a nut on that Oxycodone! She was super happy and a bit crazy. She thought it was hilarious to try and bite your finger and smack your face, but at least she was smiling.
Unfortunatley, the carseat we have (Britax) does not work with her halo since the straps can't go thru with her halo there, and the hospital car seat did not work either. The only alernative they had for us are these buckles that you pretty much buckle her into, lay her on the back seats of the car, and buckle her buckles into the seat buckles. It's obviously not the safest solution so we are stuck at home other than going to doctor's appointments. As of now, this works out okay because she can't even sit up on her own yet. Kaela has had poor muscle tone pretty much her whole life, so this doesn't help too much. They told us not to let her walk for fear that she could fall and loosen her pins or even knock one (or more) out. After they found how thin her skull was this is an even bigger concern. So far, this hasn't been a problem. She spends most of her day laying on the couch or sitting with pillows on both sides to help support her. Each day she wants to do a little bit more, which is great. We've sat on the floor with her to paint, play with playdough, and play with these awesome wooden cupcakes that you can actually color (using the 'icing' tube) thanks to Aunt Rachie. I think her hip incision bothers her the most out of everything, but over all she is doing pretty good. We are finally getting a little sleep. That's actually probably been the hardest part, no sleep :) We are just so happy to have her home and smiling!
We have had so many people visit during our stay in the hospital and at home and just feel so lucky to have such a wonderful support group near and far (including people we haven't even met in person). Your good thoughts, prayers and well wishes have done their job with helping Kaela get through this and helping Matt and I know how many people out there care so much. It means so much to us and we are forever grateful for your messages on facebook, your visits to the house, to the hospital and the packages that keep coming in the mail!! I've taken lots of pics and am printing lots things to show how loved she is, when she's a little older!! A special thanks to our parents for helping take care of our little man during the hospital stay. William had his first over night with my parents 2 nights in a row while Kaela was in the hospital, and that was a HUGE help knowing he was being well taken care of and loved while Matt and I took care of Kaela. Our parents were a huge help during the days and nights and it means so much. Another very special thank you to our wonderful friends Alisha and Bob and their girls for everything they have done. They also helped watch William, made us food, came to the hospital several times, and were there when we needed someone the most!! Alisha spent almost the entire day of Kaela's surgery at the hospital with her 2 year old just to support us, then took Will home with her so he could go have some fun. We appreciate you guys so much! My grandma and grandpa also were at the hospital from about 10 am until after 7 pm! I made sure they were able to see Kaela before they left having been there so long. I feel very lucky to have them as my grandparents!!
Megan, Vicki, Traci, Andy, Ms. Julie, thank you all for spending time with me at the hospital too!! Means so much! Katherine, a big thanks to you for all the clothes you've put together for Kaela!! Those that have sent emails, left messages, brought us dinner, again, thank you so much!! There are so many of you, and our hearts our filled with love! All of these things, big and small, make a hard time a little easier!!

There is major picture overload below...sorry, but I don't know how to do a slideshow and I really wanted to document all the stages thus far.

Daddy giving hugs before she went back
We flipped a coin to see who would take her back. I won with tails. Kaela was loopy from the meds they gave her before taking her back and she thought it was hilarious that I was dressed like that.

William and I in the waiting area
Matt's parents (Grandpa is sleeping I think :) )
Grandma, Alisha and Will
Friends Vicki and Megan came for a visit while Kaela was in surgery
Alisha and Bre helping pass the time

These are the pins. There are 3 in 4 separate places. They don't look too bad..I think it helps that they are white rather than metal.
Grandma and Grandpa (Kaela's great grandma and grandpa) seeing her in the recovery room after a long day of waiting

First night...long day!
First time sitting up and NOT happy
Blowing bubbles to help those lungs
Alisha brought her a million things including her favorite...chapstick!!
Grandma and Kaela

Grandma and Grandpa
Alisha with Mommy and Kaela
Megan and Kaela
Traci and Andy with Kaela
Mommy and Kaela
Bob and Kaela

first time in the wheelchair, she was not happy about getting there.
This computer that at the hospital worked great for Kaela's videos

2nd time I held her

This is her seatbelt
feeling a little happy

Getting ready to get out of here! Happy face from going home and strong meds
new toys

First day home, playing with her cupcakes (she was still loopy from the meds so sitting and playing was okay for the time being)

Kaela coloring on her color board

Kaela's first trip to her room with Grandma Liz..playdough makes everything okay
Grandma, Kaela, Will, Haylee, Bre, and Alisha in Kaela's room playing
Kaela sitting up in her wheelchair at home
Kaela's best friend, Bre helping her out

Watching movies on the computer, because sometimes mommy and daddy need a break from Dora and Spongebob :)

Grandparents on my dads side

My grandparents on my moms side