tag:blogger.com,1999:blog-63706792354664036652024-02-20T13:47:42.234-08:00Sweet Bailey GraceHer smile beams like sunshine, which fills our hearts with love.Bailey's Mommyhttp://www.blogger.com/profile/03293632963748423417noreply@blogger.comBlogger47125tag:blogger.com,1999:blog-6370679235466403665.post-88933598332105614232015-04-01T06:16:00.000-07:002015-04-01T06:16:14.570-07:00New beginningsSo much has happened since I last posted on here.
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We moved to North Carolina in December and we absolutely love it here. The girls have a lot more room inside and out to play! Bailey loves her new school and we are getting settled in with new doctors and new therapists. Bailey also got her brand new power chair which helps her conserve energy. Most days she loves it and enjoys being able to be independent without getting so tired.
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Last month we traveled back to Maryland for testing at NIH. Bailey had a whole body MRI and EMG studies done. I also had a Cardiac MRI done. Since the gene mutation we carry as been known to cause Cardiomyopathy (heart muscle disease) they wanted to make sure my heart was working okay. Steven should also have this testing done when he is able to take time from work, to make sure his heart is functioning normal as well. I am still waiting on the majority of the results from those tests since her NIH doctor needed to review them and compare them to her previous tests. All I do know is that she has advanced atrophy all over her body. The reason they wanted to repeat the MRI on Bailey was because in December at her annual visit they did a muscle ultrasound and her muscles had looked different than the one that was done 2 years prior.
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Since we have been in NC we have seen her new Cardiologist and her heart still checked out the be okay even though her resting heart rate was on the higher end of normal. We will continue to follow up with Cardiology every 6 months as usual.
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We have also seen an Allergy doctor which she hasn't seen in quite some time. They are running some blood tests and hoping to get her allergies more under control.
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Yesterday she followed up with Sleep Medicine. She had her tonsils and adenoids out before we moved in December and we are hoping that corrected her suggested sleep apnea. The doctor was concerned that her Oxygen levels were pretty high during her last sleep study and said a lot of children with myopathy's need oxygen while sleeping and said that may be something Bailey will need. They want to repeat her sleep study first.
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Today she is having her hearing re-tested since she failed a hearing test in her right ear. I personally think it's a fluke since she has NEVER had any issues with hearing in the past and generally hears really well. Tomorrow she gets her eyes checked. In a few weeks she will have her therapy evaluations and see Endocrinology. We're getting current checks on EVERYTHING!!
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Next month she will see Orthopedics, GI, and Pulmonary. Both girls have Genetics appointments in August and we are still waiting for an appointment with Neuromuscular/MDA clinic for both girls.
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Addison has started her Speech Therapy and we love her new Speech Therapist. She still is considered to have Childhood Apraxia of Speech. She knows what she wants to say and she is trying really hard to get the words out the best way she can. We are looking into getting her into pre-school in August.
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Our plate is more than full as usual but we are managing and we are all really happy with our move.
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<div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-BXqOiZ3NAv8/VRvvPwmtoRI/AAAAAAAAAuY/qULWjYSVnPU/s1600/girls.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-BXqOiZ3NAv8/VRvvPwmtoRI/AAAAAAAAAuY/qULWjYSVnPU/s320/girls.jpg" /></a></div>Bailey's Mommyhttp://www.blogger.com/profile/03293632963748423417noreply@blogger.com0tag:blogger.com,1999:blog-6370679235466403665.post-70973286682673648862014-11-17T12:59:00.003-08:002014-11-17T12:59:43.081-08:00Juat keep on moving forward..Bailey and Addison had appointments at NIH on Wednesday 11/5. They had several evaluations and we updated them on the last 2 years since we’ve been there. Both girls had muscle ultrasounds done, Bailey had a skin biopsy done, and then both girls had Echocardiograms. This all took about 7 exhausting hours. Both girls were really good and they each got to pick a toy from their treasure chest before we left, which made them happy!
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So the outcome of the day?
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Bailey’s muscle ultrasound was different from the last one that she had done 2 years ago and they saw things that they had never seen before. They also were still concerned with her fatigue. They think it is possible that it is more extreme than that of a person with a muscle disorder/mutation. They want to follow up with some repeat testing which she will have to do as an inpatient at NIH since she can’t fast prior to testing. They are going to repeat a muscle MRI, a specific lower muscle MRI, and an EMG with stimulation under sedation. They said it is possible that a contributing factor to her fatigue is moderate obstructive sleep apnea. She had a sleep study done at the end of September and we found out they saw some thing’s on the test. She has an appointment Monday with ENT to look for upper airway obstruction and then depending on what they see they will probably repeat the sleep study while introducing a BiPap machine. We had a horrible experience with the sleep study so hopefully this one goes better. We do not have the results of her echocardiogram yet but I suspect it is fine since she just had one done at the beginning of October and she has started a possible preventative heart medication since then. Bailey had a skin biopsy done at the end of the appointment which they will use to validate her TTN mutation and to compare to some other testing that we are waiting on from Germany.
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Addison’s blood was sent away for testing to see if she has the same TTN gene mutation that Bailey has. We will have the results for that in 4-6 weeks. If she does have the mutation she will need to have the same 3 tests that Bailey is going to have done. We are of course crossing our fingers that there is no mutation found. She had a muscle ultrasound done and they saw mild muscle abnormalities on her lower extremities. It could be normal for her age but they are not completely sure so they are going to monitor it for now and do another ultrasound in a year or so. We don’t have her results from her Echocardiogram (this was the first one she’s ever had) but the tech said he saw no signs of a cardio myopathy which is promising!
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Steven and I are scheduled to go to NIH on December 16th to have multiple Cardiac tests done. They informed me that it may not be completely necessary for me to have the testing done since Steven is the carrier and I am the variant. They are researching on if it would be beneficial for me to have the testing done. If not Steven will still go and have his heart looked at. Again, we are crossing our fingers that nothing comes of these tests!
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I feel like every time that I feel like things may start to slow down or smooth out we get bombarded with new information, new tests, new things to wait for, new everything. Even though I knew something would come of this appointment (or else we wouldn’t need to be seen at NIH) it is frustrating and overwhelming never knowing what to expect. We always have so much going on, it’s hard not to wonder why this is our life and when will things ever slow down for us or mainly for our children but this is our normal and we go through the motions because that is what we HAVE to do as parents. I’ve learned to not go into appointments expecting things to go well and then I’m not disappointed when we get bad news and I’m ecstatic when things do go well! I try to stay positive and take things one day/one test/one doctor at a time but I do have my down moments, everyone does.
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Until next time…
Bailey's Mommyhttp://www.blogger.com/profile/03293632963748423417noreply@blogger.com0tag:blogger.com,1999:blog-6370679235466403665.post-55571598932308924322014-09-10T11:57:00.001-07:002014-09-10T12:18:06.410-07:00Life keeps going and going and.... goingHello!
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Just wanted to update everyone on things that have been going on in the Breeden house!
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Since my last post in June we found out our whole clan will be going back to NIH soon (no date yet) for testing and a big meeting with Dr. Bonneman. They will be doing Cardiac Imaging (MRI) on Steven and I and Echo's on both girls as well as some other testing. I'm interested to find out what Dr. Bonneman has found out about the rest of the results of Bailey's whole exome sequencing. I'm pretty nervous. This will be our Third visit since 2011 and I don't think the nervousness will ever go away.
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We have been very slowly trying to wean Baily off of her overnight feed AGAIN. Things had been going very well until this last week. She overheated at a school function on Friday and her sugars have been off ever since then. She has also been bruising pretty badly (11 on just one leg) so I was getting concerned if her body was having trouble bouncing back due to the weaning. For some reason every time we try to get her off of this feed her body goes into complete shut down. This time has gone much better but now we're starting to worry that the overheating put her body in defense mode. So her GI suggested we bump her up 20 more ml's for 3 weeks and hopefully her body will stabilize and then we can finish weaning her by 5ml's a week instead 20 like we were doing before. Hopefully it works out. She really needs to get off of these feeds. It is starting to really affect her weight. We don't want her to be overweight especially with muscle related issues. Her Pediatrician ordered blood work to try to get to the bottom of her bruising. So we will try to get that done by next week.
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Bailey started 1st grade August 25th and she LOVES it. We are still working out little minor issues as they come along but so far the start of the school year has been much more pleasant than last year. Hopefully after she gets her power chair in October she will be able to go to school longer than 2 1/2 hours a day. She has been really disappointed in leaving early this school year. I can't say I blame her but at the same time as a Mom I can't allow her to push herself to the extreme and crash at school. Walking around the school off and on for 6 1/2 hours would be completely detrimental to her health. Fingers crossed that the power chair is a huge help for her.
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In other news! Addison had a second opinion Speech Evaluation on Monday at the Children's Outpatient Center in Laurel. Bailey's Genetics doctor recommended Addison having this evaluation to try to determine what she really needed and what may be the cause of her talking the way she does. The evaluation went really well. Addie was such a good girl for cooperating in such long testing with a stranger. The Therapist believes Addison may have Apraxia of Speech but she can not be officially diagnosed until after 3. Apraxia of speech is a motor speech disorder. The brain has trouble moving the body parts needed for speech. So she knows what she wants to say but her brain has difficulty coordinating the muscle movements necessary to say the words. I believe that's pretty darn accurate. She knows exactly what she wants to say and she tries so very hard but her words come out as only the sounds of the words or only vowels come out. So she is starting Speech Therapy there on Monday morning and she will still get Speech through the Howard County Infants and Toddlers program as well. They also want her to have a formal oral motor/feeding evaluation as well.
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Bailey has follow up appointments with Endocrinology, Cardiology, Developmental Pediatrics(both girls), GI, Orthopedic, and a Sleep Study all within the next month! Plus NIH and Addie's oral motor evaluation whenever we have dates for those. Hopefully nothing but good news comes from all of those appointments.
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I guess this has sort of became a blog for both girls now!
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There is NEVER a dull moment in this household. We're just trying to take things as they come and deal accordingly. Sometimes that is much easier said than done!
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As always thank you to those who continue to support us on this journey, it sure is a wild one!
Bailey's Mommyhttp://www.blogger.com/profile/03293632963748423417noreply@blogger.com0tag:blogger.com,1999:blog-6370679235466403665.post-28759642067509613942014-06-12T08:53:00.000-07:002014-06-12T08:53:13.265-07:00More informationI was under the impression that yesterday we would be getting the FULL results of Bailey's Whole Exome Sequencing test. Technically I did get a copy of all of the results BUT there are a few other genes aside from the TTN mutations that had variants of unknown clinical significance. A variant is an alteration to a gene. Since Children's is unclear if those specific variants mean anything to Bailey they are having Bailey's doctor at NIH go through everything very thoroughly since this is his area of expertise. So it will be some time before I know anything about those.
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We did learn that Bailey's congenital myopathy, Arthrogryposis, and possibly her extreme fatigue were caused by these TTN mutations. Therefore this is Genetic which is something we have been wondering since she was born. The combination of a mutation in Steven's genes and a variant in my genes caused the mutations for Bailey, according to the test.
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I had already stated in the previous post that these specific mutations can cause all types of muscle related diseases and issues including early onset of fatal heart and respiratory failure. To be preventative she will be getting cardiac and pulmonary work ups every 6 months.
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Unfortunately, so far we do not know what is causing Bailey to go through Hypoglycemic ketoacidosis (her crash episodes) but they are assuming at this point that it is just her body's way of telling us something is wrong. Instead of just getting a cold or virus she has the potential for her body to just go into shut down mode.
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One wonderful thing we were able to find out through this testing is that Bailey had no cancer genes in her body which is wonderful news!
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So we do not quite know what the future holds for Bailey just yet. There are some really scary things documented for these specific type of mutations but we will remain positive and hopeful that she beats those odds. We will remain cautious and preventative the best we can though.
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What this all means for Addison, we just don't know yet. Our Geneticist believes there is something going on with her but she doesn't necessarily believe it is the same exact thing that has gone on with Bailey since she is very different. She did an official full exam on Addie yesterday and she wants to await the results of her MRI on July 7th before going further with any testing. She does believe that Addie needs more aggressive speech therapy. She isn't sure if she can't process the words or she just has trouble getting them out. We do know she does understand words. She wants her to see someone at Children's as well as through Infants and Toddlers and for us to encourage communication with both verbal cues and sign language.
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Bailey had a Dexa scan (bone scan) done today and a spine x-ray. They saw the start of Osteoporosis on an x-ray a few months back and they wanted to see what the rest of her body looked like and if that may be contributing to some of her pain/soreness in her lower back and legs. We should have the results for that within few days.
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We are overwhelmed as we always are with test results. Bailey is one of a kind and as I've said before I'm not convinced we'll ever know the full extent of what's going on in Bailey's body but I'm happy we know some more information and this allows everyone to watch her heart and lungs a bit closer to hopefully prevent anything fatal. I certainly don't want to even think about losing her or having to live life without her. I just hope that our friends and family are able to understand now how serious this all has been and will continue to be. We aren't always able to participate in things because sometimes she is just too tired to function and we would rather allow her to rest than to push her and something bad happen. Everyone has been really supportive along this journey that will be never ending and we really appreciate all of the love and prayers given on a daily basis. Bailey and Addison are the light of our lives and we will do whatever needs to be done for them to strive in the best way they possibly can!
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Thanks for reading! Bailey's Mommyhttp://www.blogger.com/profile/03293632963748423417noreply@blogger.com0tag:blogger.com,1999:blog-6370679235466403665.post-12090677748530314002014-05-21T10:58:00.001-07:002014-05-21T11:00:36.342-07:00Whole exome sequencing resultsSince everyone has been asking about the results of Bailey's Whole Exome Sequencing that was done in February I decided to post here.
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We were not expecting results until July so I was surprised when I heard from our Geneticist that results were back. NIH and Children's National are working together to decipher all of the results and they have requested the extended copy so we do not know everything just yet.
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What I do know is that Bailey has mutations her TTN gene which would explain the congenital myopathy (muscle issues). A TTN gene provides instructions for making a very large protein called titin. This protein plays an important role in muscles the body uses for movement and in heart muscles. With these mutations it is documented it can cause fatal heart problem and respiratory failure. Bailey's heart has been checked and is perfectly fine as of now but they want to be proactive and monitor her heart every 6 months now. She has asthma but Pulmonary will probably be keeping a close eye on her as well. With these mutations it does not explain her hypoglycemia/metabolic crashes and they are not sure if it explains the extreme fatigue or not. They are working hard as a team to get everything they can out of the results they have. We do not have a definitive diagnosis but we are getting somewhere. This is the biggest clue we've ever had!! There is alot more from the results that they want to discuss with me at a face to face meeting but this is the main thing they have been looking at. Addison is going to have a Genetic evaluation at that meeting as well.
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Bailey's Geneticists says Bailey deserves the very best from them and that Bailey is making sure they all get smarter during the process! She said Bailey is Bailey and she has made a group of doctors really come together to try to help her.
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I'm trying to stay optimistic right now. I'm not going to think of all the things that could potentially happen or that are happening to my sweet girl. I'm going to take her to the beach for 6 days and then I'll deal with everything head on!
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Thanks for all of the continued support during this journey! We couldn't get through life without the support of our family and friends!
Bailey's Mommyhttp://www.blogger.com/profile/03293632963748423417noreply@blogger.com0tag:blogger.com,1999:blog-6370679235466403665.post-20960473561538694032013-10-04T11:51:00.001-07:002013-10-04T11:56:30.330-07:00Moving forward<a href="http://3.bp.blogspot.com/-1CkU0rN3-wk/Uk8Nf2zFb_I/AAAAAAAAAfU/HyVKSGjkrAQ/s1600/006.JPG" imageanchor="1" ><img border="0" src="http://3.bp.blogspot.com/-1CkU0rN3-wk/Uk8Nf2zFb_I/AAAAAAAAAfU/HyVKSGjkrAQ/s320/006.JPG" /></a>
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I'm terrible at blogging these days. Life just tends to get in the way of pretty much everything.
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I thought I would update since we had Bailey's follow up at MDA clinic yesterday which is a clinic we go to every 4-6 months and get to see several doctor's in one visit. It is usually an overwhelming day but when I left there this time I was actually feeling pretty happy in Bailey's care.
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We saw Neuro-muscular which is the main clinic that follows Bailey and I am in constant contact with. They are going to try Bailey on a new medicine that may help with muscle fatigue. They aren't sure if it will work since it is typically used with a disorder that Bailey does not have but they figured if it does work then it would be great especially to possibly get her to school full time in the future. We should know within a few days if the medicine will help or not.
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We saw Pulmonology who just went over how Bailey has been breathing and gave refills on her asthma medicine and did a chest x-ray just to make sure there were no changes in her lungs. Bailey was supposed to have a sleep study several months ago but we had to cancel it so we're looking at having that done in December.
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We also saw Physical medicine and rehabilitation who looked at Bailey's hands and feet, how she gets around, and what she is able to do as far a self-care. We are thinking of trying out different AFO's from Nascott at the National Rehabilitation Hospital. The way they were described would seem to be better for Bailey. We love Shriners and Dr. vB but it seems better for Bailey at this point to try out something different.
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Also we saw Nutrition who just told us to follow up with GI due to a 12lb weight gain that is pretty concerning but she is scheduled to see them in November.
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Neuro filled out her school paperwork for our 60 day review meeting with Home and Hospital services and as of right now they are keeping her at a half a day (once we work up to that) and following up the rest with the Home and Hospital teacher. I am hoping to get her to the half a day point by the end of October/beginning of November depending on her health of course.
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Bailey will see Genetics in November as well but as of right now ALL of her doctors are actively working together to get Bailey approved for REM so that they can start the process to have the Exome sequencing covered by insurance and then they will move forward with that. It will be a very lengthy process and we won't have results for several months but HOPEFULLY something will come from this that will help them know what to do to help with these dangerous Metabolic crashes that she continues to have. It is just far to critical for her to continue this way for the rest of her life. Help is needed beyond explanation.
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School has been going well, her team has been great with keeping in contact with me and having lots of emergency procedures in place for Bailey. They are constantly making sure Bailey has all that she needs while at school. She has been asking me to stay at school longer so hopefully her health will allow that to happen soon!Bailey's Mommyhttp://www.blogger.com/profile/03293632963748423417noreply@blogger.com0tag:blogger.com,1999:blog-6370679235466403665.post-69864791326813609272013-02-22T11:40:00.001-08:002013-02-22T11:40:33.931-08:00CrushedI've been meaning to update for the last few weeks but life for busy as usual!
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On February 7th Bailey had her 6 month follow up with the MDA clinic where she sees several specialists in one appointment.
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First up was Neuromuscular which we saw Meganne our go-to person between NIH and Children's. She unfortunately did not deliver good news. In my previous post I stated how close we thought we were to a diagnosis and well she totally cancelled that out. They got the last of the biopsy results from New York (mitochondrial lab) and they were negative for Mitochondrial disease. So there is one last blood test they can do through Genetics that is for Mito and after that we are back to square one again. Very frustrating to feel so close and then be pushed so far back. It hurts! We went over other recent information, saw Physical Medicine, and Pulmonary. Everyone is super concerned with Bailey's increased fatigue and staying sick every other week. Pulmonary diagnosed Bailey with Asthma which is why her cough pretty much never goes away. She was put on a daily inhaler, rescue inhaler, and nasal spray. She also needs a sleep study to make sure she breathes safely in her sleep and a repeat swallow study. She had blood taken to check her vitamin D and other levels to see if they are contributing to the fatigue!
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On February 12th Bailey saw GI, she hasn't gained any weight in over a year but she's gotten taller so her BMI is not great and she's about 8% from not being nutritionally safe again. So back on feeds she goes, 480mls a day for 4 months until follow up.
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February 22nd Bailey had follow up with the Developmental Pediatrician and we discussed her behavior and OCD tendencies which she's had going on for awhile. We are in search of a Child Psychologist to help Bailey learn to control her emotions and cope with change. It's hard to tell the root of the issues since she always has so much going on but we don't want it to get worse so to speak.
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So we have a busy next several months all while adjusting to new medicines and back on tube feeds.
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Our main focus right now is figuring out the major fatigue issue and getting control of her behaviors. I'm putting finding a diagnosis on the back burner for now. I don't know if we will ever know what's really wrong with Bailey but if we ever do find out it will just happen when it's supposed too. I just want to make sure she's safe, as healthy as we can get her, and happy! We can do those things with or without a diagnosis. Bailey's Mommyhttp://www.blogger.com/profile/03293632963748423417noreply@blogger.com0tag:blogger.com,1999:blog-6370679235466403665.post-28674271970915182882013-01-04T15:08:00.000-08:002013-01-04T15:27:20.030-08:00Happy New Year<div class="separator" style="clear: both; text-align: center;">
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Happy New Year!!
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As most people know we had our "big" appointment at NIH on December 19th. I don't think those appointments will ever get any easier on me. I always leave there so distraught after spending 8 hours listening to people recite what is wrong with my child. I can deal daily but when it's all presented to my face in an 8 hour period it's a bit overwhelming.
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- Our day started out signing new consent forms for Bailey and adding consent forms for Steven, Addison, & I.
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- Then Bailey had a PT evaluation to see the difference in the last year since we've been there, they scored her on what she can and can't do and also gave us other things to work on and that her PT's can work on too. I did ask the NIH PT if she had suggestions on what we could all work on to help her get up from laying down easier, she has always had a major head/neck lag. I was devastated by the answer I was given. She told me that we could work on things but not to beat our head against the wall if it never improves because children with these type of diseases often don't gain better head/neck control it actually gets worse. No one has ever told me that. I'm pretty sure I shed a tear walking out of there.
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- Then we had a small lunch break before they started their evaluations on Bailey and Addison.
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- At the evaluations they went over everything that's happened in the last year, looked Bailey over, noted the changes and didn't say too much. They also evaluated Addison and as we suspected she is perfectly fine and they all called her "super baby" since she is so ahead of herself with everything! Such a relief!
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-Then while we waited for Dr. Bonnemann to come in we all gave blood so that they can compare our genes to Bailey's(We will not get any type of results from this research for atleast a year).
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- Dr. Bonnemann evaluated Bailey and did another muscle ultrasound on her. Her muscles are just so damaged and in ways they aren't used to seeing, it really boggles my mind and there's too I guess.
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- Then it was meeting time! They are still awaiting one result from the biopsy(done in April) from Columbia University in New York. It is taking for freakin' ever! He did tell me they are most definitely leaning towards a Mitochondrail disease which is what we have thought and that he couldn't see it being anything else. There are several Mito diseases though so we aren't at a point to know which one yet. They also think she may have a CoQ10 deficency and if the results confirm that she will need to go on supplements. It would make alot of sense if she did have that because it is something that would explain her lack of energy! They also informed me that if she were to have another "crash" like she did August of last year they need to be notified immediately and she will be hospitalized (obviously), proper blood work done since it wasn't done right the last time, and she will need a spinal tap! EEK I don't like that idea at all! They also are debating on repeating yet another MRI. I mean really how many different MRI's does one need?
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I forgot to add they want Bailey to go back to GI for a follow up. She has been off of her feeds for 9 months and has stayed the same weight for the last year 1/2, She's gotten taller though so she looks so teeny tiny! I hope she doesn't have to go back on feeds but I guess we'll see in February!
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I'm supposed to contact our go-to person by the end of January if I haven't heard anything else about the results or a dagnosis or anything.
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So NO we still do NOT have a direct answer but we are so close I can feel it. I've never felt like we were on the edge of reaching a diagnosis but I feel it now. I just want to know what we're facing and how to better help Bailey for the future!
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Thanks to everyone for always helping us be so positive, for praying for us, for listening to us, for comforting us when we need it, and for just being there! It doesn't go unappreciated!
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I hope everyone had a very Merry Christmas!
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Bailey had a wonderful summer and on June 30th 2012 Bailey became a big sister to baby Addison Jayne :)
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She is a GREAT big sister, she loves to help with feeding her, getting her diapers, and she loves to "play" with her and make her smile.
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Bailey continued to have PT, OT, & ST throughout the summer at Howard County General Hospital, she loves it there and often doesn't want to leave when it's time to go. I'm so greatful that she can recieve outpatient therapy!
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She took her very first vacation to Nana & Grandpa Steve's WITHOUT Mommy and/or Daddy! She had a blast and is still talking about it!
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She turned 4 years old on August 21st, we had a small birthday party at our home with some family and she was so excited. She even picked out her own dress to wear!
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Bailey was very anxious to start Pre-K at the end of August, she loves her teachers and has been earning her "Gordy Bucks" to get prizes! I love listening to her tell us all about her day when she gets home! She always seems so excited! I hope the thrill for school lasts for awhile :P
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We decided to get Bailey put back in AFO's after 6 month's without them because she was falling frequently and starting to hunch over to keep her balance while walking. We picked them up at the beginning of the month, she picked them out this time and some sparkley shoes to go with them! She does have a slight curve in her back that they are monitoring and her hips are pretty tight so they are asking for more hip stretches BUT she's been walking with her back straight again! Well worth it!
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Now for the real reason why I haven't updated in quite awhile... As everyone know's Bailey had a muscle biopsy done back in April and I was waiting for the results before I posted an update. We have gotten all of the results except for the one from the Mitochondrial Lab in New York. We do have some significant findings BUT we are awaiting the last results to put all the pieces together so that NIH can give us the diagnosis they have been thinking of. Have I said before waiting really sucks? Especially when it comes to your childs life!
We are due back at NIH in December and this time around Baiely AND Addison will see PT and get muscle ultrasounds. They are looking at Addie just to make sure she doesn't have the same damage as Bailey does. I have no reason to believe she does but I am still extremely nervous that they will find something and turn my world upside down all over again! Steven & I are also going to give blood that day, Bailey is apart of a special gene study where they are going to look at all of her indivudual genes and are also going to comapre them to ours!
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Bailey is also due back at MDA clinic in December for follow up!
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I will update as results come in and things change!
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Bailey's Mommyhttp://www.blogger.com/profile/03293632963748423417noreply@blogger.com0tag:blogger.com,1999:blog-6370679235466403665.post-75596430355556076442012-04-24T15:46:00.006-07:002012-04-24T16:12:55.746-07:00It's been awhile!It's been nearly 2 months since my last blog post, we have been so BUSY!<br /><br /><a href="http://1.bp.blogspot.com/-08LaE9fFzNI/T5cyWBlDkCI/AAAAAAAAAYw/EoG4AJQwkiM/s1600/303370_3683548533054_1405320915_33610331_1999685761_n.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 191px; height: 320px;" src="http://1.bp.blogspot.com/-08LaE9fFzNI/T5cyWBlDkCI/AAAAAAAAAYw/EoG4AJQwkiM/s320/303370_3683548533054_1405320915_33610331_1999685761_n.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5735108004441985058" /></a><br /><br />Bailey ended up in the hospital for 4 days shortly after my last blog post. She was very sick with a cold but we had trouble keeping her fever under 104 and with her history of metabolic crisis they decided it would be best she stay. She ended up being just fine and recovered well!<br /><br />She had an Upper GI done at the end of March to look at what may possibly be causing her to choke. All that showed up but was several episodes of reflux! So she's been steady on her meds since Feb. and the choking has improved so far! *fingers crossed*<br /><br />Bailey & I took a nice Spring Break to NC, it was nice to forget about doctors appointments and procedures for a week! Bailey really enjoyed being there as usual!<br /><br /><a href="http://2.bp.blogspot.com/-2M8XAbxAATY/T5cytzE1hfI/AAAAAAAAAY8/KXEV3WwkEF4/s1600/170.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://2.bp.blogspot.com/-2M8XAbxAATY/T5cytzE1hfI/AAAAAAAAAY8/KXEV3WwkEF4/s320/170.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5735108412865611250" /></a><br /><br />Shortly after we came back from NC it was surgery time! On April 13th Bailey had an open muscle biopsy on her right leg. They took 4 pieces of muscle and a piece of skin to be sent away for several different tests! The surgery went well! She was admitted the night before for overnight fluids and able to go home 4 hours after surgery was over! We will get SOME of the results in June and the rest as they come in! Hoping for answers.. any kind!<br /><br />3 day's after surgery Bailey had her follow up appointment at Shriners in Philly and we met with a different hand doctor there as well. Dr. vB built up the bottom of her right shoe to try and train her stubborn foot to stay straight along with the small brace she wears. It works well until she is shoe-less! Her left foot is still looking pretty good!! I loved the hand doctor he was very informative and told me things I NEVER knew! There are several surgical options for Bailey's hands and 1 for her shoulder that could be done to increase her functionability BUT her muscles are far too weak that he thinks it would end up being more harmful than helpful! He said she may eventually get strong enough for them but if not she will get stronger as she gets older! He said she is doing wonderful even though there are things she can't do right now and to focus on the positive! I really liked him and will see him again in a year!<br /><br />Bailey has been having evaluations for outpatient therapy at Howard County General Hospital lately! Ever since September when she quit getting home services and only receiving services at pre-school she hasn't shown significant improvement and therapy plays a HUGE role in how she gets around and does things in her everyday life. So I took it upon myself to find her additional therapy and finally it's done! She will be getting PT, OT, & ST Tuesday's & Thursday's indefinitely! I'm SO happy! She will still get her services at school as well!<br /><br />Thursday she has her post-op check up, so hopefully her leg is healing well and all is good in that area!<br /><br /><a href="http://3.bp.blogspot.com/-0Ffe3fF_DNU/T5cy_NjhYCI/AAAAAAAAAZI/5WM2kM3BvKY/s1600/015.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 283px;" src="http://3.bp.blogspot.com/-0Ffe3fF_DNU/T5cy_NjhYCI/AAAAAAAAAZI/5WM2kM3BvKY/s320/015.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5735108712031412258" /></a><br /><br />Other than that Bailey is doing pretty well! Still going to pre-school when she doesn't have to miss days for appointments or being sick(which is constant). She is still her sassy almost 4 year old self, growing up fast and very anxious about becoming a big sister in July!<br /><br />Sorry for the book, I will try not to leave so much time inbetween posts!Bailey's Mommyhttp://www.blogger.com/profile/03293632963748423417noreply@blogger.com0tag:blogger.com,1999:blog-6370679235466403665.post-36896965946703535442012-03-01T12:59:00.004-08:002012-03-01T13:13:06.325-08:00Bring on the Spring!Hello March 1st!<br /><br />Bailey has had a few things going on lately!<br /><br />She's 3ft 2in & 31lbs! Growing so fast!<br /><br />Her choking episodes seem to be back in action. She choked 4 times last week, one resulting in a call to 911. It isn't seeming to happen while she's eating or drinking but random and afterwards she seems to have quite a bit of saliva in her mouth. It's very scary so we brought it up at her Genetics appointment on Monday. Her doctor looked in her mouth and noticed that her throat was extremely red and irritated! Her thought was that Bailey's reflux is back and causing her to choke. She e-mailed GI and we went there on Wednesday! They aren't sure that it's reflux because other than her throat still being very red and irritated she shows no other reflux symptoms. They put her back on her meds, made her an ENT appointment, and are debating on repeating a swallow study, upper GI, or endoscopy to take a look.<br /><br />We FINALLY got a surgery date for her muscle biopsy! April 13th! They have decided that it would be best if she is admitted the night before so she can remain on IV fluids through the night and no fasting will be necessary that way. Too afraid of a hypoglycemic episode to occur. She is getting a piece of muscle cut out of her thigh to be sent for testing and some to be kept for further testing later on. It will be a pretty big size cut and she will need stitches but she should be able to go home after the surgery is done as long as no problems arise. <br /><br />We are actively trying to get Bailey into outpatient therapy because we (and her doctors)think her stand still in speech and some other things may because she receives so little therapy at school! They also want her to go 60 days with no therapy over summer and that is unacceptable! I found a place that will take her and we are waiting on getting orders from her Pediatrician. <br /><br />We follow up next Friday (My Birthday!) at Shriners since she finished casting! I personally think she needs put back in AFO's! She was much more stable with them and since she has been without she's been falling all over the place and skinning her knee's up! Her feet are turned in and casting seems like it was HUGE waste of time and put her back instead of forward but we'll see what happens!<br /><br /><br />Until next time... :)Bailey's Mommyhttp://www.blogger.com/profile/03293632963748423417noreply@blogger.com0tag:blogger.com,1999:blog-6370679235466403665.post-7143183496629246222012-02-02T06:56:00.000-08:002012-02-02T07:23:44.737-08:00Accomplishments!((*Updates*))<br /><br /><a href="http://4.bp.blogspot.com/-EBY8ANDaI2Y/Tyqoy_asiDI/AAAAAAAAAUQ/gtOPyzhFs24/s1600/383950_3179669136384_1405320915_33398213_1718015293_n.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 191px; height: 320px;" src="http://4.bp.blogspot.com/-EBY8ANDaI2Y/Tyqoy_asiDI/AAAAAAAAAUQ/gtOPyzhFs24/s320/383950_3179669136384_1405320915_33398213_1718015293_n.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5704557471988484146" /></a>((Bailey's new hair cut! She donated 10 inches to Locks of Love))<br /><br />Bailey finished serial casting on her right foot on January 20th! Her foot was very sensitive to the touch and very sensitive to bear weight on. After almost 2 weeks of being cast free she finally started to walk independently again. She is still a little unstable and her foot doesn't look so good to me but she is back to walking and soon she will be able to go on the school bus without her Cruiser.<br /><br />Within the last week Bailey has given up her Ninny. Bailey has been very attached to her ninny her whole life. In the last year we only allowed her to have it at night time or if she was sick but at almost 3 1/2 years old it was time to get rid of it all together. The first night was very rough with alot of tears but it got easier every night after that!<br /><br /><a href="http://2.bp.blogspot.com/-yusj4fN_ans/TyqoaIdl7NI/AAAAAAAAAUE/_IYEsfvWH6Q/s1600/002.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://2.bp.blogspot.com/-yusj4fN_ans/TyqoaIdl7NI/AAAAAAAAAUE/_IYEsfvWH6Q/s320/002.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5704557044919823570" /></a><br /><br />We have also been working very hard at potty training her! She has done extremely well with only 1 or no accidents a day! She has been wearing pull ups to school and big girl underwear at home! We are trying to find ways for her to pull her pants up herself, she can get them down but her hand strength just doesn't allow her to pull them back up! <br /><br />In the last 5 months since Bailey has been in pre-school she mastered drinking from an open cup! So now as long as we are home she drinks from an open cup that's half full and she doesn't spill or gulp! <br /><br /><a href="http://1.bp.blogspot.com/-IPgNSz0sigQ/Tyqp_j0e42I/AAAAAAAAAUc/w3-fV0P-NxA/s1600/cup.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 191px; height: 320px;" src="http://1.bp.blogspot.com/-IPgNSz0sigQ/Tyqp_j0e42I/AAAAAAAAAUc/w3-fV0P-NxA/s320/cup.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5704558787430376290" /></a><br /><br />We are so very proud of all of her accomplishments! She is making lots of progress in a small time frame!<br /><br />Up coming things:<br /><br />- We are still awaiting Bailey's muscle biopsy to be scheduled!<br /><br />- We have Bailey's 2nd parent/teacher conference and IEP meeting to discuss her getting services over summer!<br /><br />- She has a GI appointment this month because her feeds will officially be over after slowly weaning her since her hospital stay in August! Hopefully she will not go into metabolic crisis!<br /><br />- I am still trying to get Bailey outpatient Physical & Occupational therapy! She receives therapy at school but it is just not enough!Bailey's Mommyhttp://www.blogger.com/profile/03293632963748423417noreply@blogger.com0tag:blogger.com,1999:blog-6370679235466403665.post-46008157783667755702012-01-19T07:06:00.000-08:002012-01-19T07:08:36.371-08:00International Day of Acceptance<a href="http://4.bp.blogspot.com/-4K4AflHUrsw/TxgxmL8R9CI/AAAAAAAAATo/PCUwMWEiuCc/s1600/3elove.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 200px; height: 200px;" src="http://4.bp.blogspot.com/-4K4AflHUrsw/TxgxmL8R9CI/AAAAAAAAATo/PCUwMWEiuCc/s320/3elove.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5699359860547777570" /></a><br /><br />January 20th, 2012, is the 3rd annual “International Day of Acceptance.” This day of celebration and advocacy was created by the people at 3E Love in order to celebrate who we are as disabled citizens. Disability pride awareness focuses on the abilities, not disabilities, of each person.<br /><br /><a href="http://4.bp.blogspot.com/-0zPocNfHZ-8/TxgxqyP2TII/AAAAAAAAAT0/-Mi6aeEBB6w/s1600/395469_192769230821892_100002664482324_301751_1081160216_n.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 319px; height: 283px;" src="http://4.bp.blogspot.com/-0zPocNfHZ-8/TxgxqyP2TII/AAAAAAAAAT0/-Mi6aeEBB6w/s320/395469_192769230821892_100002664482324_301751_1081160216_n.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5699359939549875330" /></a>Bailey's Mommyhttp://www.blogger.com/profile/03293632963748423417noreply@blogger.com0tag:blogger.com,1999:blog-6370679235466403665.post-4086101772968031762011-12-27T13:07:00.000-08:002011-12-27T13:26:46.686-08:00And the results are in...<a href="http://3.bp.blogspot.com/-4JicrKb35zQ/Tvo3j58Ho2I/AAAAAAAAATY/4VpO2hbWe-U/s1600/036.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://3.bp.blogspot.com/-4JicrKb35zQ/Tvo3j58Ho2I/AAAAAAAAATY/4VpO2hbWe-U/s320/036.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5690922169123971938" /></a><br /><br />I recieved the results of Bailey's scans today. The scans were a brain MRS and a whole body muscle MRI. They also checked her marrow and they took blood to send for research/further testing. She stayed overnight at the hospital the night before her scans as a precaution. She is not allowed to fast so they thought it would be best if she stayed on IV fluids and had glucose checks throughout the night. The scans took 3 1/2 hours under sedation and she was able to go home a few hours after they were done and she ate/came down off of the meds. <br /><br />The brain MRS portion of the scans were normal, this does NOT rule out a Mitochondrial disease but it also doesn't show a huge red flag for one!<br /><br />The whole body muscle MRI showed overall decreased muscle bulk(muscle weakness) and fatty atrophy(loss of muscle tissue) of her forearms, thighs, calves, and 9 individual muscles in her legs and feet.<br /><br />Her marrow was within normal limits which is good.<br /><br />They said this does not give them specific answers but it does appear that whatever happened to Bailey's muscles happened during fetal development and it does not appear to be progressive(it won't get worse) which is good news. The other good news is they were able to identify the right muscle to biopsy to get the best result for more SPECIFIC testing of the muscle. <br /><br />So, although we still don't have answers so to speak nor does this help determine why some of the other things happen to her it was the first step to testing and now we know of all the muscle damage. I don't know at this time what muscle they have chosen to biopsy nor do I know when the biopsy will be. I will update when I know more!Bailey's Mommyhttp://www.blogger.com/profile/03293632963748423417noreply@blogger.com0tag:blogger.com,1999:blog-6370679235466403665.post-39710173057269030262011-12-10T14:45:00.001-08:002011-12-10T15:25:54.822-08:00News..So 2 days before Bailey's Shriners appointment I had a dream about Bailey coming home in a cast.. Must be Mother's intuition because I'll be damned if that's not what happened! I guess I should start questioning my dreams. haha.<br /><br />Dr. vB said Bailey's right foot isn't looking very good, it has definitely regressed and the bone is starting to poke out of the side of her foot. He talked again about doing a tendon transfer but he'd like to wait until after she turns 4. So in the meantime he wants to try serial casting again, long leg casts for a few weeks then to a short leg cast for a few more weeks. He will then put her in a UCBL brace during the day which is a brace just for the bottom of her foot and for at night she'll have an AFO(like she has now) with straps. The good news is we are going to try to do away with a brace for her left foot ALL together since it's looked good for over a year now! So for now we will be traveling to Philly every 1-2 weeks for cast changes. Our next appointment is December 19th.<br /><br />Not really sure what we are going to do about school while Bailey is in a cast, I have to have a meeting with her teacher to figure out the best way to go about this! I'm thinking if I get her new stroller which is an adaptive stroller that acts as a wheelchair and can be used to transport her on and off the bus that there should be no problem. Once she's in a walking cast she should be fine without it!<br /><br />Wednesday is the BIG day! Bailey gets her Brain MRS & whole body muscle MRI. I am so nervous for various different reasons but it is finally here and I'm ready to get it over with and have some results. <br /><br />That's all folks.Bailey's Mommyhttp://www.blogger.com/profile/03293632963748423417noreply@blogger.com0tag:blogger.com,1999:blog-6370679235466403665.post-91670873647200332192011-10-26T09:40:00.000-07:002011-10-26T10:25:47.489-07:00Mitochondrial Disease<strong>What is Mitochondrial Disease <br /><br />Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.<br /><br /> Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.<br /><br /> Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection </strong><br /><br />Just spoke to Bailey's new Genetic/Metabolic doctor. She had some blood work done a few weeks ago when she was sick and it still showed that her organic acid was high. This is common in people with Mitochondrial diseases. They talked about it before but were un-sure and now this is pointing them in the direction that she does have a Mitochondrial disease. She needs to have the whole body muscle MRI & a Brain MRS done to confirm and to look at her lactic acid. She then needs a muscle biopsy as well. We have all of this already in the works of course, but her insurance has denied the scans because they are taking bone marrow blood supply. This is commonly taken from people who have cancer so they are having a hard time finding it medically necessary, which indeed it is. They have started the appeal process, so it will be put off a little longer but I know they will eventually agree to covering it with the right wording and explanation.<br /><br />Are we really getting closer to an answer??? Although this is not good news it is nice to possibly see a future answer to all of the things that have been happening to her, her whole life and to getting her on the right treatment path. Pray that her insurance agrees to these scans soon!Bailey's Mommyhttp://www.blogger.com/profile/03293632963748423417noreply@blogger.com0tag:blogger.com,1999:blog-6370679235466403665.post-68382694148448481232011-10-12T15:59:00.001-07:002011-10-12T17:03:08.605-07:00October 15th; My Angel BabyThis post is pretty un-related to Bailey but just spreading the word of a day near and dear to my heart! I thought I'd share my story and reasoning why <strong>October 15th </strong>means so much to me.<br /><br />Steven & I found out we were pregnant the very first time at the end of March or early April 2007, it was very un-expected and a huge change in our still fresh relationship but we embraced our blessing. Things seemed to go okay throughout the beginning of my pregnancy. I counted down the days, went to the doctors, and we got our very first (and only) sonogram. I did endure several stressors, we moved into an apartment and I started a new job full time. On my very first day of work in June 2007, middle of my shift I started to feel sick and my stomach was in unbearable pain. I tried to stick it out but I started to bleed so I left work early and went straight for the hospital in fear that something was just not right. After hours of sitting at Howard County General and getting an ultrasound they broke the most heartbreaking news... I had lost my very first baby, 15 weeks into my pregnancy. I remember not being able to breathe. They were un-able to tell me if the baby was a boy or a girl so his/her name has just always been "Baby Breeden". They were also un-able to tell me why I lost the baby other than the fact that the baby had something medically wrong so he/she couldn't survive. I had surgery(DNC)the next day to remove the baby, it was one of the hardest things I've ever had to go through. This was the first REAL hardship Steven & I endured together! 6 short months later we found out we were pregnant yet again and 8 months later we were blessed with our beautiful Bailey Grace. <br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/-Q_Qsfc1tbJw/TpYon4u9FiI/AAAAAAAAARw/YMiP71Sb5Dk/s1600/IMG.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 260px;" src="http://1.bp.blogspot.com/-Q_Qsfc1tbJw/TpYon4u9FiI/AAAAAAAAARw/YMiP71Sb5Dk/s320/IMG.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5662758247174313506" /></a><br />(The only sonogram we had done, one month before the baby passed away)<br /><br /><br />**Pregnancy & Infant loss Remembrance day is this Saturday, <strong>October 15th,</strong> please join me in lighting a candle from 7-8pm to remember all of the angel babies who were just too beautiful for earth! <br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/-cXdX0LldAV4/TpYoa0d48xI/AAAAAAAAARk/jIhaJ3CU5RA/s1600/Iamtheface_BoyGirl-300x2961.gif"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 296px;" src="http://4.bp.blogspot.com/-cXdX0LldAV4/TpYoa0d48xI/AAAAAAAAARk/jIhaJ3CU5RA/s320/Iamtheface_BoyGirl-300x2961.gif" border="0" alt=""id="BLOGGER_PHOTO_ID_5662758022690698002" /></a><br /><br />"When a child loses his parent, they are called an orphan. When a spouse loses her or his partner, they are called a widow or widower. When parents lose their child, there isn't a word to describe them."Bailey's Mommyhttp://www.blogger.com/profile/03293632963748423417noreply@blogger.com0tag:blogger.com,1999:blog-6370679235466403665.post-83386915712799262952011-09-29T09:21:00.000-07:002011-09-29T09:51:16.855-07:00Fall is here!It's been awhile since I've posted anything..<br /><br />Bailey turned 3 on August 21st, she had a Tinkerbell party at Clark's Farm. The kids got their faces painted, got to feed and pet all the animals, went on a hay ride, cow train ride, had pizza, cupcakes, and of course presents. Bailey had fun although it was pretty hot that day and she got worn out fast. Next year we'll try for cooler activities!<br /><br />August 26th we met with a new Genetics doctor that her original Genetics doctor referred us to for an after hospital follow up. He didn't have much to say because all of the blood work that was done in the hospital that could have given him some answers were either incomplete or done too late after her initial symptoms. So he gave me a prescription to carry around that lists blood work to be done in case that ever happens again it will be done correctly and right away! He also agreed to no fasting for tests anymore and he wants us to record a food diary so a Nutritionist can go over it and see if maybe Bailey's missing or getting to much of something that would cause her to have a reaction if it's taken away. He was very nice but again we left with no answers!<br /><br />We've been slowly decreasing her overnight feeds since she got out of the hospital and she has been tolerating that just fine. I'm not afraid of doing it slowly, I'm afraid of once it's done and gone completely.<br /><br />NIH & Children's are still working together to coordinate her really important MRI's! I recently contacted the assistant and it shouldn't be too much longer before we have a date of when they'll be. I'm nervous for what they may or may not find but maybe it will push us in some sort of direction and it will determine which muscle they can do a muscle biopsy from!<br /><br />Bailey started pre-school at the beginning of the month and she absolutely LOVES it! She wakes up everyday asking to get on the bus and go to school and she comes home everyday telling me all about what she did! I'm still getting used to not being as involved and trying to learn the school system and how Bailey's IEP goals are being met. I finally am communicating with her new therapists and I'm feeling better about it than I was at the beginning. I do believe she will need PT outside of school as well though.<br /><br />I will update again whenever I have more news. :)<br /><br />Bailey's last visits with a few of her therapists that have seen her since she was 1 week old<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/-KBNCcRp0l1Q/ToShK5lPVqI/AAAAAAAAAQY/dDQsVPfK3ho/s1600/283188_2366116078066_1405320915_32866915_6355375_n.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 191px; height: 320px;" src="http://1.bp.blogspot.com/-KBNCcRp0l1Q/ToShK5lPVqI/AAAAAAAAAQY/dDQsVPfK3ho/s320/283188_2366116078066_1405320915_32866915_6355375_n.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5657824240511964834" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/-QgvMiUk0cAc/ToSgv_534qI/AAAAAAAAAQI/9qDJ1HzwYl4/s1600/002.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://1.bp.blogspot.com/-QgvMiUk0cAc/ToSgv_534qI/AAAAAAAAAQI/9qDJ1HzwYl4/s320/002.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5657823778352652962" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/-IO7QZt1vs2c/ToShF_l2hFI/AAAAAAAAAQQ/4_Dx6pe9Wg0/s1600/263247_2368028605878_1405320915_32869157_4087195_n.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 191px; height: 320px;" src="http://4.bp.blogspot.com/-IO7QZt1vs2c/ToShF_l2hFI/AAAAAAAAAQQ/4_Dx6pe9Wg0/s320/263247_2368028605878_1405320915_32869157_4087195_n.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5657824156225799250" /></a>Bailey's Mommyhttp://www.blogger.com/profile/03293632963748423417noreply@blogger.com0tag:blogger.com,1999:blog-6370679235466403665.post-44444900563522373862011-08-16T10:20:00.001-07:002011-08-17T10:34:51.686-07:00Video I made for Bailey<iframe width="425" height="344" src="http://www.youtube.com/embed/n-DCI3JMOhM?fs=1" frameborder="0" allowFullScreen=""></iframe>Bailey's Mommyhttp://www.blogger.com/profile/03293632963748423417noreply@blogger.com0tag:blogger.com,1999:blog-6370679235466403665.post-68543775480578429302011-08-08T17:58:00.000-07:002011-08-08T18:23:53.820-07:00Things just got a little bit more crazyAs most of you know Bailey was hospitalized from Tuesday evening until Saturday afternoon for what they are calling a Metabolic Crisis...
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<br /><strong>Glossary - Metabolic crisis
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<br />This is a serious health condition caused by low blood sugar and the build-up of toxic substances in the blood. Symptoms of a metabolic crisis are poor appetite, nausea, vomiting, diarrhea, extreme sleepiness, irritable mood and behavior changes. If not treated, breathing problems, seizures, coma, and sometimes even death can occur.
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<br />Metabolic crises happen more often in people with certain metabolic disorders (some fatty acid oxidation disorders, amino acid disorders, and organic acid disorders). They are often triggered by things like illness or infection, going without food for a long time, and, in some cases, heavy exercise. </strong>
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<br />Last Friday we had what we thought was a great GI appointment. They felt she had gained enough weight to try and stop feeds. Great news right? I was a little apprehensive because the last 2 times we tried to stop feeds Bailey became dehydrated and we had to start them back up again. Her GI team assured me she would be fine as long as I made sure she drank alot and continued to give her extra calories by mouth. Bailey did really well until Tuesday morning.
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<br />She woke up Tuesday feeling terrible and then started vomiting, she continued to decline all day even after taking her to her Pediatrician. By the time I took her to the ER she was lethargic, wasn't talking, and hadn't peed all day. All I can say is THANK GOD we decided to go to the ER, I don't even want to think about what could have happened. Her Glucose(blood sugar) was dangerously low and her white blood count was almost triple! It took them 2 days to restore her fluids and her blood/urine tests showed signs that her body had started to shut down!
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<br />They say this is NOT because of her feeds and the last 2 times probably weren't either, they simply aren't enough to cause that much of an issue. A bunch of Specialists including her Genetics doctor and students joined forces with Bailey's NIH doctor and tried to come up with a reason her feeds have been masking something to where she can't be without them. Of course we have NO answer and they all believe it is due to Bailey's famous underlying issue that NO ONE can figure out. So now instead of just trying to find an underlying issue like the last few years we now have a critical issue to deal with. She is going to be closely observed and we have to be so careful of her getting sick because sick could throw her into another metabolic crisis and she can also no longer fast before tests (she has several coming up) because that may cause dehydration which could again throw her into a metabolic crisis. We are waiting for her follow up appointment with Genetics to hear the full plan and discuss the future while we await possible answers. It's a strong possibility that I will get Glucometer to test her sugar when/if she starts acting funny so I can act accordingly based on what it says but for now she has a fluid intake amount she has to reach each day and they restarted her feeds and we will try to wean her very slowly(1ml a week) and see what happens.
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<br />Out of everything Bailey has been through in her little life this was by far the most horrible thing I have ever had to watch. At one point they couldn't wake her up, the thought of losing her became present and it was the worst feeling I've ever felt. I've never been more terrified in all of my life. I hope to God that this never EVER happens again.Bailey's Mommyhttp://www.blogger.com/profile/03293632963748423417noreply@blogger.com0tag:blogger.com,1999:blog-6370679235466403665.post-9289242268063365612011-07-14T12:55:00.000-07:002011-07-14T13:20:24.001-07:00Sometimes life hits you right in the nose with the truth, and suddenly everything looks different.I'm not sure where to start off with this post since everything we've been through in the last few weeks leading up to Bailey's big NIH appointment yesterday is all so fresh.. I'm finding it hard to put this all into words let alone make sense of the information I've been given.<br /><br />Our appointment at NIH was overwhelming to say the least. The place is HUGE, I think we got lost 10 times throughout the day. They weren't joking when they said plan to be there all day, we were there every bit of 9 hours. They had our whole day planned out. Bailey had a PT evaluation to see what all she is able to do then we met with the team of nurses, students, and Dr. Bonnemann who took down history and did a physical exam. After the exam they did a muscle ultrasound of Bailey's legs, arms, back, and feet and then she had an EMG test done and blood work but most importantly at the end of the day we had a sit down talk with Dr. Bonnemann about all of the information they gathered and what he thought.<br /><br />Dr. Bonnemann agreed that Bailey is a very complicated child, she has several "puzzle pieces" that just don't quite fit together; Atypical Congenital Contractures, Her waves of decline, and abnormalities showing in her muscles. There are some things going on with her brain that they are un-sure of at this time and the muscle ultrasound showed that some of Bailey's muscles are indeed damaged. He recommended that Bailey have 2 complex MRI's, a scan of all of her muscles in her body and a chemical scan to show any chemical imbalances in her brain or any mitochondria that is not present in blood work. After these scans are done which will take several months, they will decide on which muscle to take a muscle biopsy from. In the mean time they took blood work and will be running more complex genetic testing. After all is said and done we will see what he comes up with. As of right now he said he has no idea what Bailey has off of the top of his head. I am not in the least bit suprised of that but it never gets easier hearing doctor after doctor say that to your face.<br /><br />I am pretty numb to the information right now, we will just take it one day at a time, do what he says, and stay hopeful. I do know she is definitely being seen by the best place to possibly find out what's going on! We have a long road ahead but that is nothing new! We will keep on keepin' on! :)Bailey's Mommyhttp://www.blogger.com/profile/03293632963748423417noreply@blogger.com0tag:blogger.com,1999:blog-6370679235466403665.post-81641799961797818892011-06-19T11:55:00.000-07:002011-06-19T12:03:47.932-07:00Happy Father's Day!I just wanted to take a minute to recognize Steven. I spend so much time talking about Bailey that I don't always give him the full recognition that he deserves. He is my rock, he holds me together when I feel as if the whole world is crashing down around me. Even when he is feeling lost, hopeless and scared too he manages to hold it together for me! He knows just what to say to make it all okay. Bailey loves her Daddy so very much! She looks out the window waiting for him to come home from work everyday and anticipates their time together. She truly is Daddy's little girl! <br /><br /><a href="http://2.bp.blogspot.com/-6XEimGPcQlE/Tf5HmS_IYVI/AAAAAAAAAMk/Bui9FYZGPNs/s1600/n1405320915_30193401_8755.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://2.bp.blogspot.com/-6XEimGPcQlE/Tf5HmS_IYVI/AAAAAAAAAMk/Bui9FYZGPNs/s320/n1405320915_30193401_8755.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5620008108262187346" /></a><br /><br />Thank you for putting us first in your life and for always taking care of us.<br /><br />Happy Father's Day!Bailey's Mommyhttp://www.blogger.com/profile/03293632963748423417noreply@blogger.com0tag:blogger.com,1999:blog-6370679235466403665.post-26554320637407658582011-06-15T17:46:00.000-07:002011-06-15T18:19:57.362-07:00Busy little beeI don't have answers yet BUT I do have dates! :)<br /><br />Cardiologist - June 27th<br />EEG - June 28th<br />MRI - July 9th<br />NIH - July 13th<br /><br />Bailey is a busy bee on a normal basis but things are going to be back to being ridiculous all over again. I'm glad the appointments are made and they aren't far away at all!<br /><br />I'm extremely glad that Bailey's MRI could be done before her NIH appointment so the results will be available and also that it's going to be on a Saturday so Steven can be there! She has to be sedated again because of her age, so hopefully there are no complications as there have been in the past. <br /><br />Today was Bailey's IEP meeting! I actually made no changes (for once) to anything they put in front of me. Her goals and objectives were right on point and I feel confident in everything that was put on the IEP. We decided on how often she will receive therapy in school and what program was best for her. Everything is finished until Pre-school orientation. She will go to Gorman Crossing Elem. starting September 1st for 2 1/2 hours a day Monday, Tuesday, Thursday, Friday. She gets a nice break in the middle of the week which I think will be great for her especially considering her increased fatigue lately. She will continue to have therapy over summer until her birthday, August 21st. We are all really excited for her and I know I made the right decision in choosing to send her to school instead of keeping her home for another year!<br /><br />I think I've finally gotten a grip on myself lately. I've been keeping busy and focusing on doing what needs to be done instead of over-working my brain on what could possibly be going on with my beautiful daughter. A friend of mine told me she often thinks "Things will be okay because they HAVE to be" and I couldn't agree more. Until someone tells me for sure things aren't okay I'm gonna keep myself believing everything will be just fine. I can't let this eat at me or I am no good in advocating for Bailey! <br /><br />Until next time...Bailey's Mommyhttp://www.blogger.com/profile/03293632963748423417noreply@blogger.com0tag:blogger.com,1999:blog-6370679235466403665.post-85888969266724456622011-06-14T12:04:00.001-07:002011-06-14T12:11:25.422-07:00Waiting on a miracle<a href="http://3.bp.blogspot.com/-GW0zyyi8h_o/Tfew3hzL64I/AAAAAAAAAMc/SfJWQMJq0n4/s1600/Miracles.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 188px;" src="http://3.bp.blogspot.com/-GW0zyyi8h_o/Tfew3hzL64I/AAAAAAAAAMc/SfJWQMJq0n4/s320/Miracles.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5618153528180337538" /></a><br /><br />Sometimes it seems like you are the only one in the world who's struggling, who's frustrated, unsatisfied, barely getting by. But that feeling's a lie. And if you just hold on, just find the courage to face it all for another day, someone or something will find you and make it all okay. Because we all need a little help sometimes-someone to helps us hear the music in their world, to remind us that it won't always be this way. That someone is out there. And that someone will find you.Bailey's Mommyhttp://www.blogger.com/profile/03293632963748423417noreply@blogger.com0tag:blogger.com,1999:blog-6370679235466403665.post-90285850075509489772011-06-02T15:12:00.000-07:002011-06-02T15:34:19.021-07:00Everything is changing<a href="http://4.bp.blogspot.com/-5xo1-4myW2c/TegP2fsg2QI/AAAAAAAAAMQ/lcqDjrgdals/s1600/mini%2Bmeet%2Bup%2B11%2B8.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 214px;" src="http://4.bp.blogspot.com/-5xo1-4myW2c/TegP2fsg2QI/AAAAAAAAAMQ/lcqDjrgdals/s320/mini%2Bmeet%2Bup%2B11%2B8.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5613754364412877058" /></a><br /><br />People have been wondering what my emotional Facebook statuses have been about lately so I figured I would explain. I am having a hard time pulling myself together since Bailey's MDA appointment last month. <br /><br />In just 2 weeks since my last blog post things have changed even more so with her. Along with her increased fatigue, falling often, and pushing off her leg for support she has shown some other changes. These changes have not only been visible to me but to her whole Infants and Toddlers team as well. She is most definitely having a decline. Whether it be short term or long term who's to know? Bailey's speech has become harder and harder to understand. Not every sentence is hard to understand but enough of them to frustrate her because we constantly are asking her to repeat herself several times in hopes to understand what she's saying. It's upsetting. She's been stuttering somewhat but that I can't tell if it's related or simply her processing what she's going to say. She's back to holding her mouth open the majority of the time, something we had worked so very hard to get under control so she could eat and drink safely. <br /><br />Bailey just underwent several testing to get her ready to transition to pre-school in September and based on one of the tests Bailey is now showing a 25% Cognitive delay where as in September 2010 and every time she had been tested before that there was NO Cognitive delay present. I know 25% is not huge but going from no delay to a 25% delay is kind of a big deal considering all of the other changes going on. Her Neurologist is very concerned.<br /><br />So we are on the more urgent list for an appointment at NIH, hopefully it will be sometime in July. In the mean time they want Bailey's MRI & EEG repeated and they want her to meet with a Cardiologist to rule out any heart defects that may be causing major fatigue etc. <br /><br />I am... overwhelmed to say the least.<br /><br />In better news Bailey's Eligibility meeting was Wednesday and of course she was eligible and will be starting pre-school September 1st. Her IEP meeting is June 15th! We also had an equipment evaluation today and Bailey will be getting a snazzy new adaptive stroller since she is outgrowing her umbrella stroller and desperately needs one now for even shorter distances. This stroller is pretty cool and she can be transported in it when she goes to school if I choose for them to do that which I think is awesome! They were limited on helping me with lifting assistance since Bailey is still so little but if things continue down the path they are going or when she gets older other adaptive equipment will be available to us at that time!<br /><br />Thank you to everyone's unconditional love and support during this rough time for us! It is really very much appreciated and I will update when I have some more answers.Bailey's Mommyhttp://www.blogger.com/profile/03293632963748423417noreply@blogger.com0