Thank you all for your wonderful and supportive responses to our last update! You all were a big encouragement to us and it was good knowing so many people were praying for our family and our precious Mateo! God has answered our prayers!! It was so good to finally be at Seattle Children's Hospital and to actually be talking to the doctor who knows about Mateo's condition! We were so thankful for NEWS, any News! And as far as we are concerned this is great news!! So here is the scoop...( bare with us through the explanation so you can understand why this is good news)...
The first day: Mateo went in to get another MRI and a CT scan of his spine. The nurses were very nice and Mateo was being very brave...though we could tell he was nervous, the nurses were very impressed with his attitude. I guess it is pretty common for a lot of screaming and crying....our child? No...he was laughing and giggling (at some moments uncontrollably!) Thats our Mateo for you! Though we knew that he was doing this because of his nerves, we were still comforting him and being positive with him. He was scheduled to meet with the anesthesiologist first then get his MRI and then they would move him to the CT Scan and do that next. But...they decided that because he was a bright and compliant child, they would have him do the CT scan first before they put him under anesthesia. Two reasons...one they actually get a better picture if he is awake and can follow there orders of stretching arms..etc. and two...then he won't have to have as much anesthesia given him (twice as long). So we did it first and he did great!! Josh and I got to be in there with him and we were so proud of him. And as we walked back, all along the way there were people asking if it worked and our nurse said yes...and they were all impressed! (If it sounds like I am bragging a little...I am! I am so proud of my son and for all of your prayers! We knew God was with us (we had prayed this with Mateo) and that he was comforting and protecting Mateo! Then we went back to our room and he went under anesthesia for the MRI part. We were told that we could go get coffee and come back in 45 min. So we went up and got some food and when we got back he was done and in his room. He was still sleeping and slept maybe 20 mins more. He woke up, they took his IV out, gave him some juice and crackers (which he promptly downed and immediately asked for more- that's our son! :)) and then they sent us home.
The Second Day: We had to check in at 7:45am for our appt with Mateo's Neurosurgeon. We ended up waiting 45 mins...but we were ok with that, because we figured he might have been using that time to go over everything. Then Mateo said he needed to go potty...and so Josh took him (as they were leaving I told them to hurry incase the dr came) 20 seconds later the Dr. walked in :) Of course! So he asked me to tell him about everything leading up to this appt. while we waited for Mateo to come back and while he pulled up Mateo's MRI pictures and CT Scan. on the computer. It was amazing to finally get to see the Mateo's spine! The doctor was great at explaining things and showing us things on the pictures. He was also good at answering questions...not once did we feel rushed ( I have been very nervous about covering everything in a half hour appt!) So...Mateo's spinal cord is split, but there is no bone (as of now) in between the cords! There is just tissue. Which is amazing news! Mateo's cord is tethered, but it is tethered at the bottom, which is relatively simple to go in and snip it. If it had been tethered by the bone or cartilage in the area were it is split...the surgery would be much more difficult, complicated, and risky! When I say tethered, keep in mind a normal spinal cord is supposed to hang loose in the spinal column. So tethered means it is attached somewhere. This is a problem because as he grows and moves the cord will be stretched and cause pain and loss of neurological functions (walking, bladder and bowel function...) So Mateo is going to have this surgery at the beginning of January. Why do we think this is good news? Well, first of all, this type of spinal cord untethering surgery is fairly straightforward. And this Dr. does it 1-2 times a week (unlike the worst case scenario surgery to fix a split cord tethered by bone, 2 times a year). It is a small incision and Mateo will have to stay flat for 3 days and be in the hospital about 4 days total. After that he should be good for a while! As far as we know, no physical therapy, no special treatment afterward... For a little better basic explanation from the hospital click here.
So we are encouraged because after this surgery, there is a good chance that Mateo will be great! (of course he is already great!) We will just keep our eyes open for any major changes in his functions, and then he would get another MRI when and if that would happen. The Dr. also wants us to have a urodynamic test done on Mateo before the surgery to get a baseline of his bladder function (which we are so thankful for...from my research I felt it was very important to have this done and I couldn't get anyone up here to agree with me...so when he was trying to convince us that it was important...I was so relived! :)) We will do this the week before the surgery. There are still some unanswered questions about how all of this could effect him and what does this mean for him in the future, but they are questions that really no one knows, because it is such a rare condition and when it does happen each child "malforms" uniquely. So each child has unique challenges and so we will just have to wait and see. :) God knows! And He is taking care of Mateo and us as his family! We are thankful for Mateo's doctors and nurses! We are thankful that he can have it done soon! (Jan.) We are thankful for my sister Melissa and John, who live in Seattle and have let us stay with them and use their car as needed! We are thankful for my mom and sister Mindy who watched our house and dog Oliver, while we were gone. We are thankful for insurance and the Native hospital! We are thankful for my Uncle Rich who offered his $50 Companion fare so we could afford for Josh to fly down with us! We are thankful for Josh's family for their offer of upgrades (bummer we couldn't use) and any help we needed! We are thankful for all of your calls, email, and post showing your concern and love, for the offers of help, money, and meals! Thank you for loving our little ones, and taking such good care of us!
Praise God for listening and answering our prayers and for giving us such a support system!
Love
Maria, Josh, Mateo, and Noah
P.S.
My grandma is doing great after a triple heart bybass surgery (80 years old and counting :)!!) Praise God!
My Sister Melissa is recovering from her C-section and baby Jackson is doing great...he is almost 6 pounds now! It was a blessing to get to meet him and help them a little. :) I will try to get some pictures of the boys together! Their first cousin! Josh and I are now an Aunt and Uncle for the first time! :)
And we should be able to continue in our adoption! Yay!
