Pre-K graduation and test results... now we hit a brick wall

Welcome summer!! These last few weeks have flown by us! Last Friday Brennan graduated from Pre-K. I will admit this mama had tears. Tears of joy to see him standing up onstage. To know how far he has come and overcome some obstacles. We still have a long road ahead! We are so proud of him. Cant believe he will be a Kindergartner next year! 

                        

This past week has had a lot of up and downs. We did recieve the results of his genetic screening. What we thought was awesome news that everything was fine.. everything negative for all major medical they were looking for turned into not so good news the next morning. I got a phone call from the pediatrician that he also had his results. I told him we knew from the genetics counselor and everything was negative.. awesome!! Well not so much. The one test that was part of the Chiari puzzle..  they didn't even do it!!! That made my stomach turn. Livid  was what I was feeling. So now we have hit a brick wall. I have made phone calls Friday and hoping to hear something this next week what the next step is. The one test that was crucial we still do not have answers for. So until then... we wait!  The other part of the bad news was that our insurance is denying Brennan's speech therapy at the hosptial. It has been a back and forth deal with us and insurance. Long story short... I will be making an appeal. For those that know Brennan know he desperately needs this. Finally got him someone that is awesome and working with him one on one. For right now he goes one day a week since we have to pay until we get through the appeal. I don't want him to lose his spot! This mama has been a little stressed out this week! Hoping things will start to turn around for him and us. :)

The next big appointment is June 25 at the Craniofacial Institute at Cardinal Glennon. We meet with the plastic surgeon team to see if he truely has a sub mucous cleft palate. This will be a long appointment!

We would like to thank everyone for the continued thoughts and prayers. We still have a long road ahead. Also thank you to those that have helped with donating to Brennan's Go Fund Me page. If you would like to help Brennan out with his journey his go fund me page is www.gofundme.com/brennensjourney. This will help with his medical bills and therapy bills he has now and in the future! 

Big week... now we wait! "B" strong

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.

 

                                                                            

                                         

Lets rock and roll!

Its the night before Brennan's tonsilectomy. I guess I should be used to the whole hosptial routine. Just seems like it is becoming the norm here. Seem like this will be a walk in the park surgery compared to his brain surgery in January. I pray it all goes smooth and no complications.  I will be updating everyone throughout the day.

Seems like another chapter is being written in our book. I think I seriously need to write a book and call it "Something about Brennan....". I never really thought one medical diagnosis would lead to so much more! Thursday will also begin a huge chapter in our lives. The genetic bloodwork begins. We will finally have all the answers! Once we get the results we will finally have a game plan in place. I am acutally getting nervous about this! 

We would like to thank everyone for their continued prayers and support for Brennan. We have set up a go fund me account for him to help with medical bills and therapy he will need. If you would like to help Brennan on his journey you can donate to www.gofundme.com/brennensjourney. We thank those who have donated to help Brennan out. 

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!

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!

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.

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.

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. 

Symptoms of hypermobility EDS are:

• loose joints
• easy bruising
• muscle pain
• muscle fatigue
• chronic degenerative joint disease
• premature osteoarthritis
• chronic pain
• heart valve problems
• skin does not heal correctly

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!

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!