Hello All! Well.. we survived the tonsillectomy. They are gone and another chapter written in the book. We are hoping to see some improvement in the next month or so. Brennan did great up until bed time Monday night. All I can say is coffee was my best friend Tuesday morning. He was up most of the night with so much pain, I was tempted to go to the ER to get control of it. Tylenol was not touching it. He has struggled to eat and drink this past week. We really have been pushing him to drink and eat popsicles but he is being stubborn. These past couple night have had some rough patches. He has been waking up crying from pain. Not just pain from his throat but his whole body. Weather changing and mixture of allergies and Chiari also. I am dragging from lack of sleep but I still keep plugging away. That is what us mom's do! I am hoping as the week progresses he will start to eat and drink more. Sleep would be great too!!!
Thursday was a big day for us. For some people that think why is Thursday considered big... well... it was the blood draw for his genetic screening. This is a huge. Some people don't understand the circumstances of what has been going on with Brennan. This is what we have been waiting for.... answers. Answers to the last 5 years of his life. All the answers are sitting in 2 vials of blood at the lab waiting to be processed. I am not going to lie.. I am nervous. I have been nervous since they discussed with us at the meeting that they were doing run the tests. This is not your average blood test. This test is a 3 week wait... going down to the DNA, chromosomes, genes.. etc. There are things that could come back that we may have never discussed. Things that might freak us out. Things we didn't want to know but we need to know. Things that we did discussed and it does show it being positive. I have been thinking the last couple day of what could come back. All the what if's and could be questions starting running through my mind. I do know that whatever comes back from those tests, Chris and I are going to try to be prepared. We have to stay strong! "B" strong!
We feel like we are on the right track now. A few years ago we didn't know what to do or who to talk to. Now we have so many doctors I can't keep track. I have a handy dandy notebook.. It was the mommy gut that gave me the push. It is just knowing in a few short weeks we will finally have the answers. We will finally have a game plan. No more what if's or could it be. It is the real deal.
This past week, I got asked a lot of "I don't know how you do it or Chris do it"... "how do you handle this". My answer.. we just do. I work full time, Chris works full time. We have 3 kids. We juggle our schedules around a lot. We keep going. We communicate. We always make sure we both can be there for Brennan's appointments so that we both can hear what is going on. We both try to attend our children's activities together. It is important to both of us we do this for them. There are times we may be running different directions but it is a rare occasion. Since we got the diagnosis for Brennan we had to make some adjustments but we try not to make it a big deal. I look at Brennan and wish he could be able to play baseball or football and be normal. There are times I have come home and have lost it wishing so bad this was a bad dream. I have cried many of times over this. It can be stressful and it is a lot to take in, but we deal. As a mom, you want a happy healthy kid. A kid that doesn't ever have any issues and can do normal boy stuff. It breaks my heart looking at Brennan. Knowing he looks normal outside but the pain on the inside is there.
We will continue to stay strong. No matter the outcome of the results we will continue with what we are doing with maybe some more adjustments along the way. This whole situation has been a learning and teaching experience. We want to make more people aware of what Chiari is. It may even help another family/child out that is having the issues like what Brennan has been going through. The next couple big appointments Brennan coming up are June 25 we see Dr. Plikiatis at the Cranofacial Institute to look at his mouth structure for a possible sub mucous cleft palate. July 21 we have his 6 month check from surgery with Dr. Elbabaa and his MRI. In October we see Dr. Geller for another follow up. Next Tuesday he starts speech therapy at the hospital.
