Well...our family has been through A LOT in the last 3 months! This is a post we have needed to write, but there are times when I think about writing it I am not sure how or what to say. I know that sounds a bit dramatic, but there has been some tough news and circumstances. One thing that hasn't changed is that we are trusting the Lord to help, guide, and comfort us through it. Also, God has blessed us with a loving supportive family, church, and group of friends (even Josh's colleagues), and we are so thankful for all of you!
Early this summer Mateo had had a couple of weeks where we saw something like seizures. So he was given an EEG and then referred to the only Pediatric Neurologist in the state. We have seen him 3 times this summer and each time he does not seem concerned with Mateo's brain. He did agree to do some standard testing to look for some things that might have caused the seizures including an MRI. During the first appt. with him he did a physical evaluation where I remembered to mention that he has had a slight curve of the spine that yearly we are supposed to be checking. He did see it and that reminded me that at Mateo’s 3 year wellness check up (coming up soon) I was going to ask Mateo’s pediatrician to x-ray it again. It had been X-rayed when we first got home with Mateo and was just a slight curve that we would watch yearly…not enough of a degree of curvature to officially call it “scoliosis”. So when I took him in for his 3 year appt. we had it x-rayed and we were told there was a slightly greater curve than before, and that we would be referred to an orthopedic dr/surgeon. I didn’t think too much about it, because I already believed he had scoliosis and figured this appt. would just make it “official”. In the three weeks between our 3 year check-up and the appt. with the Orthopedic Dr. we had Mateo’s MRI scheduled. For anyone who is not aware of this, to do an MRI on a little one they have to sedate them so they won’t move or be completely freaked out during the time they are in the big, loud tube. Well, Mateo did not do well on the sedation and he kept fighting it, so they kept giving him more. Though they say they never went over the amount they were suppose to give him…I was not happy with how much they gave him… and I could tell something was wrong. They eventually kicked me out of the MRI room, but then shortly after, the nurses were running around grabbing things, and I knew something was really wrong and they wouldn’t say. Shortly after that they were wheeling him out and it sounded like he couldn’t breath. It was a very scary moment for Josh and me!! And to make it worse they weren’t answering my questions…they were giving me answers but not to anything I was asking. Anyways…to try to wrap this up briefly…(I know it is too late for that) our first MRI try was not a positive experience not to mention unproductive. He was shortly fine, they rolled him on his side and had him on oxygen, and then they let him sleep off all of the drugs. Then, when he did wake up, we had about 1.5 hours of him screaming bloody murder…and if you know our little guy this was very uncharacteristic of him. He was so disoriented and nothing we could do would comfort him. It was a very hard time. They pretty much said he must have had too much flem and he couldn’t protect his airway when he was on the drugs and that next time we do this, if we were to decide that this was important enough to try it again, he would have to do general anesthesia and have his airways tubed. At that point, I was thinking… if it is up to me I don’t think that this is worth all of this!
Next we met with the Orthopedic Dr. and he told us, yes, there was scoliosis but that was not what he was concerned about. There were a couple of vertebrae that were malformed and that could be indicative of a few serious conditions, but of course he wouldn’t be able to know for sure until he could look at an MRI of Mateo’s entire spine. So….back to the MRI drawing board.
The second MRI went a lot smoother, though it was practically a whole day of it. Maria had just had surgery 2 days before (more on that later) so Josh and Josh’s dad took Mateo and spent the day at the hospital waiting. It was supposed to be a 2 hour MRI of the brain and the spine, but ended up being 4.5 hours not including the sedation part and the recovery- waking up part. Then it took us almost 3 weeks to get a follow up appt. to be told the results (our original orthopedic dr. hurt his knee and needed surgery himself so we were referred to another orthopedic dr.). During this month and a half Josh and I were trying to stay positive! It seemed like it could be serious or not too serious, and we didn’t have enough information to freak out one way or the other. Also, while we did the waiting game, we would both look at our Mateo and just be amazed at how wonderfully he was doing and think “how bad could it be?” So…needless to say we were not prepared for the results. We also had both boys with us and though we both felt like we had been kicked in the stomach, we felt the immense responsibility to react neutrally for Mateo’s sake. (He was already really jumpy at this appt. –the last time he was in the building was for the MRI). So our news: Mateo has a VERY RARE condition called Diastematomylia. In-uetero his vertebrae formed incorrectly and instead of curving around to create a spinal column to protectively house his loose spinal cord, they curved around and then continued to curve back around and split his spinal cord into two pieces. So kind of like for a part of his spine he has two small spinal columns housing a spinal cord split into two pieces. Now what does this mean for Mateo? Well, basically without treatment (which is at least one major, risky surgery) in a few years as he grows through growth spurts, he will be paralyzed and loose all functions at least from the waist down, and there is also great, chronic pain associated with this condition. The pain caused by the spinal cord being tethered (or attached to the spine in some way that will stretch when he is growing or being active) The spinal cord is supposed to be loose because as you grow the spine grows at a 40% faster rate than the cord eventually being much longer than the cord. There are still a lot of unknowns because each case of this condition is unique and we have to wait to see a specialist –a pediatric neurosurgeon- to tell us how bad Mateo’s case is and when they think surgery will be needed. From the little we can find online about this condition…there are two controversial differing thoughts on when to do the surgery (surgeries). Some think it should be done as soon as possible, before any loss of neurological function appears, and others prefer to wait until symptoms appear (I think with the caution if you do it too early there might be later surgeries that will need to happen and then you can end up with secondary problems and problematic conditions from more spinal surgeries). Deep Breath… The first 2-3 days were hard (for lack of a better work) but the one thought both Josh and I had that was comforting to us that first night was “this is new news to us, but not to God. He has known it all along, part of his plan, and he will be with us through it all.” We also, were/are so thankful for our Medical care/insurance, and SO GLAD Mateo is a part of our family!!
So it was a frustrating 3 week journey trying to find the right pediatric neurosurgeon to be referred to. But we finally know who we are seeing and when. Until then, we will not know much more than what I have just typed. Please pray for us the first week of December! Mateo will be spending another half day getting his MRI redone with an additional CT scan at Seattle Children’s Hospital. Then the next day we will meet with the Neurosurgeon. J It is good to have an appt. and look forward to a time when we will have more answers.
Of course because we are unsure if Mateo will need surgery right away or it is a few years off for him, we have had to put our adoption on hold. So after this appt. in Seattle the first week of December we will not only know more of what life will look like for Mateo but also what the next year will look like for our family. We still as a family pray for our little one in Ethiopia, and know God has a plan for our family! Now, just for the patience to wait and see how it will all work out! J
During this time I (Maria) have been having health problems. I have had a bad gallbladder for almost a year and I have been doing everything in my power to keep it (was scared of surgery). But right about the time of Mateo’s MRI’s it seemed to flare up along with new worsening symptoms. So I ended up having my gallbladder out. Praise God it went well, and for my husband, family and church for helping our family out during a very stressful week! I couldn’t pick up Noah for 1-2 weeks and so I needed lots of help taking care of my little ones! Since the surgery I have had quite a few of my symptoms return, which is so discouraging! I have to pray almost daily to fight against the fear of the “unknown” or “unknown symptoms” going on with me! We are still narrowing down all of what is going on with me. I am working with my naturopathic doctor and my primary care provider on it. We are checking some food allergies including but not limited to gluten, wheat, and dairy! So, please pray that we would figure out what is going on so I can spend more of my focus on Mateo’s doctor trip coming up and Noah! I would love to feel healthy again!
Sweet, Noah, he is doing well! We have also, had some health issues with him! He stopped gaining weight at 9 months and then slowly lost it. He also, has seemed like his stomach was always bloated, yet he was always hungry!!! Poor little guy started to seem more miserable than good! Though, after just figuring out some of his food allergies, and trying to get his iron up, he is starting to be a much happier and content baby/toddler! We are so thrilled to see him doing better! He has just started walking on his own (more than 2 or 3 steps) and it is so fun to watch! Mateo and Noah are great buddies and miss each other when they are not together! Noah even takes better naps when Mateo is around!
And my husband Josh! Thank God he has been blessed with good health during all of this! What a precious husband and daddy he is!! He has held our family together in support, prayer, and understanding. Please pray for him! Please pray that the stress our family has been through in the last few months and maybe about to continue through, would not crush him under the heavy weight of responsibility!
Also, during this time, my mother had shoulder surgery, my older sister just had her first baby a month early, with about 2 weeks of complications until they induced her and she labored for 28 hours and then they did a c-section, and my grandma is about to go in tomorrow for open heart/bypass surgery. Please pray for my Grandma! We love her so much…and selfishly would love to have more time with her! Though, I know she is going to a much better place! Praise God Mom’s shoulder is recovering! Praise God I have a new (small) yet healthy nephew- Jackson Cole! Praise God that Melissa is recovering and enjoying being a new mother! (though it hasn’t been updated with pictures yet you can read their blog on the left under “twitchell zoo”.) Praise God that John (Melissa’s husband) was offered his dream job the day after Jackson was born! (He has been laid off since a month after they knew they were expecting their first child) God’s timing is perfect!
Well, I need to go now! This has been a very long post. Please pray for us and our family, and please feel free to contact us…I will try to respond J Also, so many people have asked me to let them know how things go…I am worried I have forgotten already everyone whom I said I would. So please, feel free to call or email and ask…and I will try my hardest to make time to update this when we have more information.
Love
Maria
Noah and Jackson hanging out...
Mateo and Mommy waiting for the shuttle to go to the hospital for the surgery.
Noah about to go for a stroller ride to the store...he is having a lot of fun walking up and down the halls with Granny pulling his lady bug toy he got for Christmas. You would think he owns the hotel by how proudly he walks.
Mateo just lights up when baby Jackson comes to visit...he is so sweet and precious to his newer cousin and loves holding, talking, and tickling him. (Jackson is almost 2 months old)
