November's News
November so far has brought us a mixed basket of news. It has also brought us to another great physician and the addition of a brilliant mind to Elizabeth's team. It is also leading us down a path of additional testing, additional departments and additional waits for (hopefully) additional answers. We are also less than a month away from Elizabeth's surgery date.
The first week of November brought some news from some of the lab work that was drawn on the day of testing at the end of October. Elizabeth's "Organic Acids Urine Screen" showed that she had moderate lactic acidosis and traces of glycerol. Dr. Safier's office called and said that he wanted to have the urine test repeated and were going to put a script into the system. That way, we could go to the lab at any time and have the test done. The Organic Acids Urine Screen is a useful diagnostic tool for a variety of diseases. I had done some research into why they use this type of test, and the doctor's had explained to me it's purpose as well. I decided that I would take Elizabeth down to the lab to have it repeated likely on Veteran's Day, since I was going to be off that day anyway.
I have a friend, Sara, whose daughter was diagnosed with a rare Mitochondrial Disease called "Pearson's Syndrome." I also have a longtime friend, Rachel, who was recently diagnosed with a Mitochondrial disease. I have followed both of their stories closely for the past few years. I admire both of these women more than they possibly could understand. Rachel and Sara are both bright, beautiful, and strong women who are advocates for awareness about Mitochondrial diseases. If it isn't enough that they are battling them in one way or another in their own lives, they are out there spreading the word and educating others about these rare Mitochondrial diseases and syndromes. They both have reached out to me to offer their support during this journey with Elizabeth. I admire them both incredibly, and I am grateful for their knowledge, friendship and support.
I had done some research myself on Mitochondrial diseases, and it seemed to me that several of Elizabeth's syndromes were in line with some of the Mitochondrial diseases. So, I discussed the possibility of seeing a Mitochondrial specialist with Elizabeth's team. They agreed that it wouldn't be a bad idea, but they informed me that it may be quite the wait. So, I called Heather to help me get into see a Mitochondrial expert at CHP. Heather called me back within minutes asking if I could be there the very next day on Thursday, November 6th to see Dr. Amy Goldstein a Neurologist and Mitochondrial Disease specialist. I, of course, said that we would be there. I immediately called the office and requested a sub for the next day. I also mentioned to Sara that we had an appointment with Dr. Goldstein, and Sara had wonderful things to say about her and her expertise.
My mom usually goes to appointments with me, but she was already taking my grandparents to the hospital on Thursday for an appointment for my grandpa. My Grandpa Kepple has recently been struggling with his own health issues. I'm totally fine and capable of taking Elizabeth to appointments by myself, but it is nice to have someone with you. I am out of sick and personal days at this point, so my time off from work is unpaid. I did get approved for FMLA, so my job is safe. The unpaid days are obviously a financial issue for us, but right now my focus isn't on how many days of work I am missing. My focus is simply Elizabeth and our family of four. I have been to every appointment with Elizabeth since the beginning, and I have every intention of keeping that up. I have very detailed knowledge of her medical history, which is helpful for the intake with all of these different departments and physicians. I also take notes, ask a lot of questions, and do a lot of research to stay on top of all of these different answers that we are receiving about Elizabeth. Since my mom could not go, I called and asked my Aunt Nancy to go with me. Aunt Nancy is a former ER nurse. She is patient, hilarious, and a really great companion. She said that she would be glad to go, and I was grateful for her help.
The appointment with Dr. Goldstein was thorough, informative and very useful. Dr. Goldstein was everything that I had imagined and more. We reviewed Elizabeth's extensive medical history, discussed recent testing, and she examined Elizabeth. I was amazed at her clinical and diagnostic insight. She was brilliant, and she was very willing to explain things to me. In fact, she had me sit beside her while she reviewed Elizabeth's brain MRI picture by picture. She did this, because she felt that her brain MRI was not read correctly, and that there was more going on with the brain MRI than was flagged on the report from the Radiologist. Dr. Goldstein explained that she agreed that Elizabeth had the Periventricular Leukomalacia (PVL) that was flagged on the report. However, she also noted that Elizabeth had several other issues present than just the PVL. She showed me on the images of the brain MRI what she was seeing and explained her reasoning to me. I sat beside her taking notes and absorbing the information. I'm fascinated by the brain. In fact, neurophysiology was one of my favorite courses at Penn State as a Psychology major. So, I was familiar with the structures in the brain to which she was referring during the review of Elizabeth's Brain MRI. The other issues that Dr. Goldstein noted were as follows:
1) Elizabeth's optical nerves are small. She recommended an appointment with Dr. Christine Roman-Lantzy at the Pediatric VIEW program at West Penn. Dr. Roman-Lantzy is a world renowned Cerebral Visual Impairment (CVI) specialist. Our vision therapist, Josette, questioned Elizabeth having CVI at our initial intake, and Dr. Goldstein concurred with the diagnosis of CVI. In CVI, the eyes are structurally normal, but due to anomalies and issues with the internal structures in the brain, vision is impaired in the individual. This occurs, because the brain does not efficiently communicate to the eyes and optical systems, which impairs vision. Elizabeth has always had issues with her vision, particularly with focusing on and tracking objects. The CVI diagnosis explains a lot, and the small optical nerves were a key diagnostic finding.
2) Elizabeth has several extra pockets in her brain. This could be clinically relevant or irrelevant. It may be that individuals without delays and who have normal functioning may also have these extra pockets. However, brain MRI's are not usually done on people who are functioning normally, so the clinical relevance is undetermined at this time.
3) Elizabeth's ventricles are undulating. The posterior ventricles are larger than the anterior ventricles. This means that the borders of the ventricles are not clear and distinct.
4). She does have PVL. However, Elizabeth has diminished white matter not only in her ventricles, but she has diminished white matter throughout her brain. In our brains, we have a combination of white and grey matter. Our grey matter largely is comprised of our neurons/ nerves and the synapse, which are important for communicating information to our various body systems. Grey matter is responsible for thinking, computing, memory and storage of information. Our white matter contains axons, which connect the parts of the grey matter together. The white matter helps to make the communication from our brain to our bodies more efficient and streamlined. So, when you have diminished white matter, it inhibits the ability of the brain to communicate effectively and efficiently. This helps to explain why it takes Elizabeth a lot longer to achieve gross/ fine motor milestones. Her brain simply lacks the appropriate means to communicate messages to the rest of her body since she has diminished white matter.
5) Lastly, Dr. Goldstein noted a few issues with Elizabeth's Corpus Callosum. The Corpus Callosum is a "C" shaped bundle of thick nerve fibers/ neural tissue. It is largely responsible for connecting the right and left hemispheres of the brain together. The Corpus Callosum is also responsible for helping the two hemispheres of the brain to communicate to each other and to the rest of the body. Elizabeth's Corpus Callosum is thin, so her bundle of nerve fibers is smaller than normal. When the Corpus Callosum is thin, it is called Hypoplasia of the Corpus Callosum. Also, it appears that a portion of the "C" is missing, which is called Partial Agenesis of the Corpus Callosum. This could be another reason why her brain has trouble communicating messages to the rest of her body. Dr. Goldstein said that she recently attended a conference with a Dr. Sherr at UC@ San Francisco. Dr. Sherr is conducting research on Corpus Callosum deficits in individuals. Dr. Goldstein felt that we should be linked up with Dr. Sherr's research program, and she gave me the information.
Dr. Goldstein explained Elizabeth's developmental delays are not simply because she was born prematurely. She also said that at this time that she is not focusing on a Mitochondrial explanation for Elizabeth's many issues. Dr. Goldstein said that she believes that Elizabeth has a genetic/ metabolic disorder that is causing her delays, other medical issues, and that has caused the various "midline" defects that Elizabeth exhibits. These "midline" defects include the anomalies in her brain, her cleft palate, facial malformations (wide nose bridge, asymmetrical eyelids, frontal bossing), and the pharyngomalacia and laryngeal clefts. Something happened, or rather went wrong, during her development that caused various defects along her "midline." Dr. Goldstein explained that she had several diseases/ disorders in mind that she wanted to test Elizabeth for, however she was going to start with her top seven. She wrote down a list of the disorders that she was trying to rule in/ rule out at this time. Dr. Goldstein said not to go home and look them up, because some of them were pretty scary. I am not posting that list on here at this time, because that way no one else looks them up and gets scared by Google. She said that we hope that this is not what comes back, but due to her symptomology we need to rule them in or out. She also recommended that we see Gastroenterology for a consult on the intermittent diarrhea that Elizabeth battles from time to time. Dr. Goldstein ordered a slew of blood and urine lab testing, and said that she wanted to see Elizabeth in 3 months. At that time, she said that we would see where we were at with test results and continue testing until we figure it out. Dr. Goldstein also added that she hopes that a year from now we have a name for whatever it is that Elizabeth has going on, but that it could take a lot longer than that. Dr. Goldstein also added a Video EEG to Elizabeth's testing. Elizabeth's routine EEG in October was normal, however she slept through the entire test. Elizabeth occasionally has a staring episode, and it is difficult to get her out of them. So, they prolonged video EEG was warranted to try to catch Elizabeth in one of those staring episodes. This will be the only way to tell if those episodes are in fact seizures. I thanked her for her time and for her brilliance. She was amazing. Then, Aunt Nancy and I took Elizabeth to the lab.
While at the lab, the lab workers helped to draw as much of Elizabeth's blood that was ordered as they could. They could not draw all of the blood for the requested testing in one day, and they also did not get enough urine. So, we decided that we would come back another day to get the rest done. Elizabeth did great. She cried more about being held down and still than she did getting pricked with the needle. They gave her a strip of princess stickers, and we were on our way.
Aunt Nancy and I paid for our parking and left. I was thinking about all of the information that my brain had absorbed in the 2+ hours with Dr. Goldstein. I was so grateful for the cancellation in her schedule that allowed for us to see her so quickly, and we are definitely blessed to have her on Elizabeth's clinical team. Aunt Nancy and I decided to go to Olive Garden for lunch on our way home. It was so nice to be able to spend the day with her, and I cherish our time together. Aunt Nancy is so supportive, reassuring, and I adore her.
I called Heather, our scheduler, and had her add Gastroenterology and a video EEG to the Hematology and Pulmonology appointments. She gladly agreed to help, and she said that she was trying to get a few scheduled when around the video EEG. We will be admitted for 24 hours for the Video EEG, and so we have the capability to have an appointment or two before or after if the other departments have openings that fit into that schedule. Heather said that she would be in touch. I also contacted Dr. Sherr's Research Assistant at UCSF and left a voicemail. Then, I got online and filled out the website form for the Corpus Callosum Research Studies that Dr. Sherr and his team are conducting at UCSF. His research assistant contacted me that evening, and they have releases signed by us to get a copy of Elizabeth's brain MRI for their review. Hopefully, they will be able to shed some light into her case as well. I also called Dr. Christine Roman-Lantzy's office and made an appointment for Elizabeth in January to have her weigh in on Elizabeth's CVI.
Dr. Goldstein's nurse called me the next day. She said that some of Elizabeth's blood work had come back from the lab. One of the tests was Elizabeth's Immunoglobulin A (IgA), and the results indicated that her IgA was very low. Dr. Goldstein also wanted Elizabeth to get into see Immunology to have them weigh in on why her IgA was so low. So, I called Heather and had her add that to the list.
On Friday, November 7th, I called an made an appointment at the pediatrician for Elizabeth. Earlier in the week she had started to develop a cough. The cough was progressively sounding worse despite our usual regimen of inhalers, cool mist humidifiers, Vick's menthol rub, etc. The doctor confirmed that Elizabeth had another case of Bronchiolitis. Elizabeth has had several cases of this since she was born, and I was familiar with the diagnosis. So, we amped up the inhaler use to include more frequent doses of Albuterol through her spacer. Bronchiolitis is a viral infection, so an antibiotic would be useless. It usually takes about 10 days to run it's course in Elizabeth, so I was concerned that it may impact her upcoming surgery if the Bronchiolitis chose to stick around longer than usual.
On Veteran's Day, Jason and I were off from school. So, after Elizabeth's OT appointment in the morning, we packed up and headed back down to CHP. Elizabeth seemed to be feeling much better that day, so we decided to go down and get the rest of the ordered blood and urine testing done. Some of the testing will take some time to get back, so we wanted to make sure it was done and sent to the lab. Celtan enjoyed playing with the model train display and the Ipad centers on the third floor at CHP. We were there a few hours trying to get Elizabeth to pee to get enough for a urine sample. Finally, we were successful and all of her testing was complete and set to the lab.
Elizabeth's 18 month well visit with Dr. Vigliotti was on Thursday, November 13th. Elizabeth continues to grow slowly along her own curve. She was 18 lbs 3 oz. and 32 inches tall. It is clear that she is very delayed in terms of social, developmental, gross and fine motor milestones. So, we don't go over the typical developmental checklists when we attend well visits. It's really more depressing than helpful, so instead we rejoice when she does achieve any kind of milestone. We know that she has to work pretty hard to achieve anything that she accomplishes, and we just take enjoyment in the fact that finally her hard work has paid off... even if it is at her own pace. We discussed the recent developments in her case, her upcoming surgery, and then Dr. Vigliotti examined Elizabeth. She was still coughing, although the wheezing had pretty much vanished. However, she was very fussy, listless, only wanted to be held, and she seemed to be having difficulty picking her head up. Dr. Vigliotti soon discovered that she had yet another ear infection, and that the tube in her right ear was blocked. He prescribed antibiotics for her. Dr. Vigliotti also encouraged us to keep building her Early Intervention team. I explained to him that earlier in the week we decided to add an additional hour of speech per week, and that we were also adding a nutritionist to Elizabeth's EI team. He also said that he was going to send some emails on Elizabeth's behalf, because he felt that she should see a Pulmonologist before her surgery. He also suggested that with Elizabeth's anemia, low immune system, and recent string of infections that we avoid large crowds, others who are sick, and unnecessary travel in an effort to keep her healthy between now and her surgery.
It looks like the series of departments that have been added to our list are going to be coming up in December and January. Elizabeth's surgery will be December 2nd at CHP. She will see Genetics and then Hematology on the morning of December 16th. We will be admitted that day in the afternoon for her Video EEG. The following day we will be discharged from the EEG and will see Pulmonology (unless it does get moved up to before her surgery). Then, in January we will see Dr. Roman-Lantzy on the 13th and Gastroenterology and Immunology on January 14th.
The remaining weeks of November are looking to be pretty quiet for us. Our Thanksgiving plans will largely depend on how Elizabeth is feeling, and the health of our family members. We will likely be staying in simply to avoid her catching anything that her immune system can't fight off that would postpone her surgery. Her surgery is a mere 5 days after Thanksgiving, so that will be a crucial time for us to ensure that she remains healthy. We also do not have any appointments scheduled until her surgery unless something should come up between now and then. As of right now, we are hoping this ear infection passes quickly and the antibiotics do their job. We also are hoping that as the lab results slowly filter in that they are promising. We are thankful for Elizabeth's team, her supporters, our family and friends, and our coworkers. Here's to a peaceful end to November.
The appointment with Dr. Goldstein was thorough, informative and very useful. Dr. Goldstein was everything that I had imagined and more. We reviewed Elizabeth's extensive medical history, discussed recent testing, and she examined Elizabeth. I was amazed at her clinical and diagnostic insight. She was brilliant, and she was very willing to explain things to me. In fact, she had me sit beside her while she reviewed Elizabeth's brain MRI picture by picture. She did this, because she felt that her brain MRI was not read correctly, and that there was more going on with the brain MRI than was flagged on the report from the Radiologist. Dr. Goldstein explained that she agreed that Elizabeth had the Periventricular Leukomalacia (PVL) that was flagged on the report. However, she also noted that Elizabeth had several other issues present than just the PVL. She showed me on the images of the brain MRI what she was seeing and explained her reasoning to me. I sat beside her taking notes and absorbing the information. I'm fascinated by the brain. In fact, neurophysiology was one of my favorite courses at Penn State as a Psychology major. So, I was familiar with the structures in the brain to which she was referring during the review of Elizabeth's Brain MRI. The other issues that Dr. Goldstein noted were as follows:
1) Elizabeth's optical nerves are small. She recommended an appointment with Dr. Christine Roman-Lantzy at the Pediatric VIEW program at West Penn. Dr. Roman-Lantzy is a world renowned Cerebral Visual Impairment (CVI) specialist. Our vision therapist, Josette, questioned Elizabeth having CVI at our initial intake, and Dr. Goldstein concurred with the diagnosis of CVI. In CVI, the eyes are structurally normal, but due to anomalies and issues with the internal structures in the brain, vision is impaired in the individual. This occurs, because the brain does not efficiently communicate to the eyes and optical systems, which impairs vision. Elizabeth has always had issues with her vision, particularly with focusing on and tracking objects. The CVI diagnosis explains a lot, and the small optical nerves were a key diagnostic finding.
2) Elizabeth has several extra pockets in her brain. This could be clinically relevant or irrelevant. It may be that individuals without delays and who have normal functioning may also have these extra pockets. However, brain MRI's are not usually done on people who are functioning normally, so the clinical relevance is undetermined at this time.
3) Elizabeth's ventricles are undulating. The posterior ventricles are larger than the anterior ventricles. This means that the borders of the ventricles are not clear and distinct.
4). She does have PVL. However, Elizabeth has diminished white matter not only in her ventricles, but she has diminished white matter throughout her brain. In our brains, we have a combination of white and grey matter. Our grey matter largely is comprised of our neurons/ nerves and the synapse, which are important for communicating information to our various body systems. Grey matter is responsible for thinking, computing, memory and storage of information. Our white matter contains axons, which connect the parts of the grey matter together. The white matter helps to make the communication from our brain to our bodies more efficient and streamlined. So, when you have diminished white matter, it inhibits the ability of the brain to communicate effectively and efficiently. This helps to explain why it takes Elizabeth a lot longer to achieve gross/ fine motor milestones. Her brain simply lacks the appropriate means to communicate messages to the rest of her body since she has diminished white matter.
5) Lastly, Dr. Goldstein noted a few issues with Elizabeth's Corpus Callosum. The Corpus Callosum is a "C" shaped bundle of thick nerve fibers/ neural tissue. It is largely responsible for connecting the right and left hemispheres of the brain together. The Corpus Callosum is also responsible for helping the two hemispheres of the brain to communicate to each other and to the rest of the body. Elizabeth's Corpus Callosum is thin, so her bundle of nerve fibers is smaller than normal. When the Corpus Callosum is thin, it is called Hypoplasia of the Corpus Callosum. Also, it appears that a portion of the "C" is missing, which is called Partial Agenesis of the Corpus Callosum. This could be another reason why her brain has trouble communicating messages to the rest of her body. Dr. Goldstein said that she recently attended a conference with a Dr. Sherr at UC@ San Francisco. Dr. Sherr is conducting research on Corpus Callosum deficits in individuals. Dr. Goldstein felt that we should be linked up with Dr. Sherr's research program, and she gave me the information.
Dr. Goldstein explained Elizabeth's developmental delays are not simply because she was born prematurely. She also said that at this time that she is not focusing on a Mitochondrial explanation for Elizabeth's many issues. Dr. Goldstein said that she believes that Elizabeth has a genetic/ metabolic disorder that is causing her delays, other medical issues, and that has caused the various "midline" defects that Elizabeth exhibits. These "midline" defects include the anomalies in her brain, her cleft palate, facial malformations (wide nose bridge, asymmetrical eyelids, frontal bossing), and the pharyngomalacia and laryngeal clefts. Something happened, or rather went wrong, during her development that caused various defects along her "midline." Dr. Goldstein explained that she had several diseases/ disorders in mind that she wanted to test Elizabeth for, however she was going to start with her top seven. She wrote down a list of the disorders that she was trying to rule in/ rule out at this time. Dr. Goldstein said not to go home and look them up, because some of them were pretty scary. I am not posting that list on here at this time, because that way no one else looks them up and gets scared by Google. She said that we hope that this is not what comes back, but due to her symptomology we need to rule them in or out. She also recommended that we see Gastroenterology for a consult on the intermittent diarrhea that Elizabeth battles from time to time. Dr. Goldstein ordered a slew of blood and urine lab testing, and said that she wanted to see Elizabeth in 3 months. At that time, she said that we would see where we were at with test results and continue testing until we figure it out. Dr. Goldstein also added that she hopes that a year from now we have a name for whatever it is that Elizabeth has going on, but that it could take a lot longer than that. Dr. Goldstein also added a Video EEG to Elizabeth's testing. Elizabeth's routine EEG in October was normal, however she slept through the entire test. Elizabeth occasionally has a staring episode, and it is difficult to get her out of them. So, they prolonged video EEG was warranted to try to catch Elizabeth in one of those staring episodes. This will be the only way to tell if those episodes are in fact seizures. I thanked her for her time and for her brilliance. She was amazing. Then, Aunt Nancy and I took Elizabeth to the lab.
While at the lab, the lab workers helped to draw as much of Elizabeth's blood that was ordered as they could. They could not draw all of the blood for the requested testing in one day, and they also did not get enough urine. So, we decided that we would come back another day to get the rest done. Elizabeth did great. She cried more about being held down and still than she did getting pricked with the needle. They gave her a strip of princess stickers, and we were on our way.
Aunt Nancy and I paid for our parking and left. I was thinking about all of the information that my brain had absorbed in the 2+ hours with Dr. Goldstein. I was so grateful for the cancellation in her schedule that allowed for us to see her so quickly, and we are definitely blessed to have her on Elizabeth's clinical team. Aunt Nancy and I decided to go to Olive Garden for lunch on our way home. It was so nice to be able to spend the day with her, and I cherish our time together. Aunt Nancy is so supportive, reassuring, and I adore her.
I called Heather, our scheduler, and had her add Gastroenterology and a video EEG to the Hematology and Pulmonology appointments. She gladly agreed to help, and she said that she was trying to get a few scheduled when around the video EEG. We will be admitted for 24 hours for the Video EEG, and so we have the capability to have an appointment or two before or after if the other departments have openings that fit into that schedule. Heather said that she would be in touch. I also contacted Dr. Sherr's Research Assistant at UCSF and left a voicemail. Then, I got online and filled out the website form for the Corpus Callosum Research Studies that Dr. Sherr and his team are conducting at UCSF. His research assistant contacted me that evening, and they have releases signed by us to get a copy of Elizabeth's brain MRI for their review. Hopefully, they will be able to shed some light into her case as well. I also called Dr. Christine Roman-Lantzy's office and made an appointment for Elizabeth in January to have her weigh in on Elizabeth's CVI.
Dr. Goldstein's nurse called me the next day. She said that some of Elizabeth's blood work had come back from the lab. One of the tests was Elizabeth's Immunoglobulin A (IgA), and the results indicated that her IgA was very low. Dr. Goldstein also wanted Elizabeth to get into see Immunology to have them weigh in on why her IgA was so low. So, I called Heather and had her add that to the list.
On Friday, November 7th, I called an made an appointment at the pediatrician for Elizabeth. Earlier in the week she had started to develop a cough. The cough was progressively sounding worse despite our usual regimen of inhalers, cool mist humidifiers, Vick's menthol rub, etc. The doctor confirmed that Elizabeth had another case of Bronchiolitis. Elizabeth has had several cases of this since she was born, and I was familiar with the diagnosis. So, we amped up the inhaler use to include more frequent doses of Albuterol through her spacer. Bronchiolitis is a viral infection, so an antibiotic would be useless. It usually takes about 10 days to run it's course in Elizabeth, so I was concerned that it may impact her upcoming surgery if the Bronchiolitis chose to stick around longer than usual.
On Veteran's Day, Jason and I were off from school. So, after Elizabeth's OT appointment in the morning, we packed up and headed back down to CHP. Elizabeth seemed to be feeling much better that day, so we decided to go down and get the rest of the ordered blood and urine testing done. Some of the testing will take some time to get back, so we wanted to make sure it was done and sent to the lab. Celtan enjoyed playing with the model train display and the Ipad centers on the third floor at CHP. We were there a few hours trying to get Elizabeth to pee to get enough for a urine sample. Finally, we were successful and all of her testing was complete and set to the lab.
Elizabeth's 18 month well visit with Dr. Vigliotti was on Thursday, November 13th. Elizabeth continues to grow slowly along her own curve. She was 18 lbs 3 oz. and 32 inches tall. It is clear that she is very delayed in terms of social, developmental, gross and fine motor milestones. So, we don't go over the typical developmental checklists when we attend well visits. It's really more depressing than helpful, so instead we rejoice when she does achieve any kind of milestone. We know that she has to work pretty hard to achieve anything that she accomplishes, and we just take enjoyment in the fact that finally her hard work has paid off... even if it is at her own pace. We discussed the recent developments in her case, her upcoming surgery, and then Dr. Vigliotti examined Elizabeth. She was still coughing, although the wheezing had pretty much vanished. However, she was very fussy, listless, only wanted to be held, and she seemed to be having difficulty picking her head up. Dr. Vigliotti soon discovered that she had yet another ear infection, and that the tube in her right ear was blocked. He prescribed antibiotics for her. Dr. Vigliotti also encouraged us to keep building her Early Intervention team. I explained to him that earlier in the week we decided to add an additional hour of speech per week, and that we were also adding a nutritionist to Elizabeth's EI team. He also said that he was going to send some emails on Elizabeth's behalf, because he felt that she should see a Pulmonologist before her surgery. He also suggested that with Elizabeth's anemia, low immune system, and recent string of infections that we avoid large crowds, others who are sick, and unnecessary travel in an effort to keep her healthy between now and her surgery.
It looks like the series of departments that have been added to our list are going to be coming up in December and January. Elizabeth's surgery will be December 2nd at CHP. She will see Genetics and then Hematology on the morning of December 16th. We will be admitted that day in the afternoon for her Video EEG. The following day we will be discharged from the EEG and will see Pulmonology (unless it does get moved up to before her surgery). Then, in January we will see Dr. Roman-Lantzy on the 13th and Gastroenterology and Immunology on January 14th.
The remaining weeks of November are looking to be pretty quiet for us. Our Thanksgiving plans will largely depend on how Elizabeth is feeling, and the health of our family members. We will likely be staying in simply to avoid her catching anything that her immune system can't fight off that would postpone her surgery. Her surgery is a mere 5 days after Thanksgiving, so that will be a crucial time for us to ensure that she remains healthy. We also do not have any appointments scheduled until her surgery unless something should come up between now and then. As of right now, we are hoping this ear infection passes quickly and the antibiotics do their job. We also are hoping that as the lab results slowly filter in that they are promising. We are thankful for Elizabeth's team, her supporters, our family and friends, and our coworkers. Here's to a peaceful end to November.
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