It's getting to be that time again! Spring is upon us and we have hit the busy point in this household!!! Bring on baseball! We have been busy with doctor appointments and the start of genetic testing. Here is the update on Brennan. On May 11, Brennan will have his tonsils removed. We are hoping this will help improve his speech and maybe his appetite. They are also a 3+ in size and the doctor's that we have seen all have said they would not be surprised if he had sleep apnea. Our neurologist said he was not about to put him under the sleep apnea test. He has been through enough already so... out they come.
We have started the process of the genetic screening. Lots of information that was thrown at us all in one day. As of right now, Brennan had an x-ray on his back since the question of scoliosis was brought up. We had one done at our hospital. The first radiologist said his back looked absolutely fine.. negative on anything. Our pediatrician wanted a second opinion and the second radiologist stated there was a slight curvature in his spine. With it being considered less than 5% curved, they do not consider it scoliosis but have noted the curvature and will keep an observation on it. Will do a follow up in 6 months and do another measurement. We asked about Brennan and Ehlers-Danlos Syndrome since he was showing signs ans symptoms. She stated she believed he has something called benign joint hypermobility syndrome. Benign joint hypermobility syndrome (BJHS) is an inherited connective tissue disorder in which joints can move beyond their normal range with little effort. All I can say is I disagree with her and so does our pediatrician. I told the counselor I want a second opinion on this. She stated that with the blood work they are ordering for him, they are wanting to see the numbers and the diagnosis just may change. I am hoping for a straight answer on this.
As the meeting went on, Dr. Kirby was really listening to Brennan talk. People that know Brennan know he has a major speech issue. She asked a bunch of questions regarding when Brennan was a baby. She asked if he vomited a lot and if it was through his nose. Both of those questions were a yes. She also noted how nasally he sounded when he spoke. Chris and I were surprised when she told us she has a major concern that he has a submucous cleft palate. A submucous cleft palate is one that is "hidden" beneath the lining of the
roof of the mouth. The lining (mucous membrane) may make it difficult
to identify the cleft, as it is not visible, but detectable by careful
manual examination. This type of cleft may appear in the soft palate and
be lacking in muscular tissue, with the area's muscles pulling
perpendicular to their normal positions. . This produces functional difficulties for a person including speech problems, feeding difficulties or middle ear dysfunction. DING DING DING...Chris and I never heard of this but reading on this, Brennan does fit the characteristics. So she sent over a referral for a cleft palate specialist to look at him.
We will also be having some major blood work done on him that will answer a lot of questions for us. It may not be the ones we want to hear but I think finally we will know everything and finally start moving forward with a game plan. We will head to Cardinal Glennon to have the blood work done and will wait for results. They usually take anywhere from 2 to 6 weeks to get. I called and made an appointment at the CG Cleft Craniofacial Center. I can officially say I am adding 3 more doctors to our list. June 25 we will see Dr. Plikaitis, the plastic surgeon/cleft palate specialist that will be over seeing this. She will be doing an exam on him along with pictures to see if he truly has this. We will also see an audiologist, ENT and a speech pathologist for some other testing. This will be a 4 hour process and we should have a definite answer of yes or no of the cleft palate. If he does indeed have this, he will have to have surgery to repair. Great.. another surgery... it will be a major answer and will help him but I dread him having another surgery.
We had a speech evaluation done at the hospital. He will be starting there and will be attending through out the summer to help keep up with his speech so we do not get behind. We feel that he may make great progress being in a one on one setting with the speech therapist.
July 21 we have his MRI scheduled for his 6 month follow up since his surgery. I am anxious to see the MRI and the comparison of the one they did in Dec to the one that will be done in July. We also are scheduled to see Dr. Elbabaa that day too! I can't remember what day but I know we are seeing the neurologist somewhere.. to many doctors and appointments.... trying to keep everything straight! LOL
I feel like we are finally getting somewhere. What started out as a new chapter of Chiari Malformation has opened up to a whole new book! We have a long road ahead of us still. Still getting answers. We have set up a go fund me account for Brennan. If you would like to help him out you can check out his page at www.gofundme.com/brennensjourney. We very much appreciate those that have donated to help Brennan with his medical bills, now and in the future and the therapies he will be going through. We also appreciate all the prayers and thoughts for him and our family. It means a lot to us!
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