Wednesday, May 6, 2015
Finally gonna have answers!
Hello all! Today we got exciting news! Brennan's bloodwork for the genetic screening was approved! This is a huge step for him and us. Finally gonna have a majority of the answers we have been looking for. He will start the process May 14th. The nurse told us that it may take 3-6 weeks. They will call me the first week of June with the results...hopefully!
Tuesday, April 28, 2015
Doctors appointments, tests... oh my!!!
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!
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!
Saturday, April 4, 2015
Just another week...
Another week come and gone. Friday marked 10 weeks post op. This week brought in storms and warm weather and with that came more headaches and pain. Just the change in weather affects him greatly. Tylenol has been flowing through like water! Aside from the pain, the beginning of the week brought nice weather and we enjoyed being outside. I know one thing.. where there is dirt and rocks.. you will find Brennan! He is happy when he plays with his tractors and dump trucks.
Right now Chris and I are still discussing when to make the appointment to get his tonsils taken out. It has been recommended by 3 doctors to get them out. We are anticipating April 22 when we start the genetics screening. I believe we will finally have all the answers we are looking for. Whatever is thrown our way we will deal with it. We are still waiting to hear back from the hosptial about his speech therapy. Hoping to hear something soon!
If anybody is interested... there is a go fund me account opened up for Brennan. It is set up to help off set some of his medical bills and to help raise awareness of Chiari Malformation. The link is www.gofundme.com/brennensjourney. Any extra we make will be sent to www.asap.org
We thank everyone for their continued prayers and thoughts for Brennan.
Right now Chris and I are still discussing when to make the appointment to get his tonsils taken out. It has been recommended by 3 doctors to get them out. We are anticipating April 22 when we start the genetics screening. I believe we will finally have all the answers we are looking for. Whatever is thrown our way we will deal with it. We are still waiting to hear back from the hosptial about his speech therapy. Hoping to hear something soon!
If anybody is interested... there is a go fund me account opened up for Brennan. It is set up to help off set some of his medical bills and to help raise awareness of Chiari Malformation. The link is www.gofundme.com/brennensjourney. Any extra we make will be sent to www.asap.org
We thank everyone for their continued prayers and thoughts for Brennan.
Saturday, March 28, 2015
Neurologist visit 3-27-14
Wow... how time does fly! Time gets by you! Brennan had his follow up appt with Dr. Geller from his surgery on 3-27. That was also marking his 9 week post op. Hard to believe! His scar looks good but still itches and at times still hurts him.
There is a vascular EDS but we will not know anything about that or any other issues until the genetic screening is done. Brennan has a few other symptoms that goes along with the hypermobility EDS. Also during our conversation he stated that looking at Chris and I he thinks that I may be the "carrier" of this because of my features and characteristics. Yeah... this had me scared and thinking!
During his visit Dr. Geller did a thorough exam on him. After further examination, questions and answers, Brennan is showing signs and symptoms of Ehlers-Danlos syndrome. He stated because he is not a geneticist he can not be certian and directly make the diagnosis but he definitely has what you would see in EDS hypermobility. What is EDS? Ehlers-Danlos syndrome (EDS) is an inherited condition that affects the connective tissues in the body. Connective tissue is responsible for supporting and structuring the skin, blood vessels, bones, and organs. It is made up of cells, fibrous material, and a protein called collagen. Ehlers-Danlos syndrome is caused by a defect in collagen production. This condition is caused by a group of genetic disorders.
This is an underlying condition of Chiari. There is no cure.. just like Chiari. We also got a referral to start speech therapy at the hosptial. We asked Dr. Geller about some of the the other issues we have seen with Brennan. He stated they are all related to Chiari. We will have to deal with it. May not be easy but we will find a way. We go back in October for another 6 month check. I love how Dr. Geller is caring and understanding. He is staying on top of this.
April 22 we start the genetics screening. We will know for sure more detail of what is going on with Brennan. It will take 6-8 weeks before we get the results of the tests. July 21 he is scheduled for his MRI on his head, neck and full spine. They will compare his last MRI to this one. As for now.. we wait for the screening and just deal with whatever is thrown at us. Now that spring is here... we will be busy with Ty playing baseball. Poor B... he cant't play but he sure will be cheering on his big brother!
Wednesday, February 25, 2015
Waiting game!!!
Wow! We have been so busy with lots of things I have not had time to blog! We finally got our genetic screening packet! Took me a couple of days to fill it out but it is now sent back to Cardinal Glennon and now we wait for our call for an appointment! Hoping to find out some more information about Brennan and if he does have any other underlying conditions related to Chiari. As for Brennan.. he is doing good. We have our good days and bad days with him. Last couple of days have been rough with him. His head still hurts along with his back. I was hoping his apppetite would change but so far nothing. I think the weather has been pretty rough on him. We continue to montior him and note changes in him. Thanks to everyone that keeps the prayers and thoughts coming our way! We appreciate them!
Here is a pic from his 4 week post op. I think his scar looks good and healing well!
Monday, February 16, 2015
Check up
Hello everyone! Friday, February 13th was Brennans check-up from his surgery. The appt went well and they are very happy with how well the incision is healing! During the visit they had him do a few neurological tests and checked him out. He has been complaining of his head hurting more and his lower back also. Anne, Dr. Elbabaa's nurse practitioner stated that if his back continued to hurt the next couple weeks then we would have a lower lumber MRI done. He is scheduled for a follow up MRI in July and another visit with Elbabaa too. We are just waiting on the paperwork to proceed with genetics testing to see if there are other underlying conditions with him. We will continue to monitor his Chiari and note any changes to the doctor.
Here you can see a progression of how well his incision is healing!
Sunday, February 8, 2015
Busy! Busy!!
Wow! Been a while since we have made an update! Been trying to get back into the routine of things and adding a few doctor appts in between! Last Thursday we did a follow-up with Dr. Papazian to address the tube issue in his ears. During his ABR the audiologist told us his tubes were clogged and we needed to have them looked at. Needless to say while seeing Dr. Papazian he addressed that both tubes have fallen out but Brennan has alot of fluid agian in his ears. So we are scheduled for a hearing test with Dr.Lane in Monday and with those results we move to plan B which is still in the works! Friday marked two weeks since hia decompression surgery. Brennan is healing very well! Dr. Elbabaa did an amazing job!
This week we have 3 appts for Brennan! Monday is with the ENT/Audiologist... Tuesday we see Dr. Gerwe for his 5 year check and follow up since his surgery and Friday we go back to Cardinal Glennon for his follow-up since his surgery and talk about the next phase of dealig with Chiari! Busy! Busy!!
In between all of this.. we did manage to celebrate his birthday!!
Subscribe to:
Posts
(
Atom
)