Update: November 26
Mae has a big week ahead- We will be going to U of M on Wednesday to get the results of her MRI from last month and she will also be meeting with the CHIRP team so this post will be short as we will have more information later in the week.
Last week Mae's bloodwork was not good and she had to restart her infusions- Although this was extremely upsetting we realize it is just a little bump in the road and in the grand scheme of life, Mae is doing amazing things. Her cycle is at 3 hours and resumed with the same medicine dose as before we stopped for the few days.
Mae visited Dr. Padesky, her pediatrician, this morning and she is doing very well. After checking her ears, the tubes look good and in place. Her height and weight look good and the new skills she has started doing- clapping, babbling with more sounds, climbing stairs, etc... are all GREAT things that show wonderful progress! We continue to give thanks for the beautiful miracle that Mae is.
More information will posted later this week.
'Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.' Philippians 4:6
Monday, November 26, 2018
Wednesday, November 14, 2018
BIG News... Cautiously Optimistic!
Update 11/14/18: Mae is officially DONE with her infusions! Read that again- Mae is officially DONE with her infusions! We are cautious to share this information because we still have the possibility of restarting them, but, for the first time in more than a YEAR, Mae was not hooked up to her infusion pump last night!
The CHIRP team called yesterday and told us that her bloodwork from Monday looked great and they are confident in going to this next step which is to allow her to try and maintain her blood levels herself, without the aid of the IV infusions. We are praying that her body continues to be strong and that she will not need to go back on them. Bloodwork is scheduled for Monday and will continue to be weekly while we maintain her line at home.
At her appointment on the 28th, in two weeks, if all continues to go well, we will discuss/schedule a surgery time to get her line removed- This will be a procedure requiring anesthesia in the operating room. We must keep her line in at home for a few weeks while we make this transition because putting the line in (and taking it out) are major procedures and we want to be sure that she does not need the infusions.
Please continue to pray for sweet Mae while we take this major step forward in her treatment. We feel so fortunate to be loved and cared for by so many people. Mae is truly a miracle and she continues to show us daily just how special she is. Praise God!
'I will give thanks to you, Lord, with all my heart; I will tell of all your wonderful deeds.' Psalm 9:1
The CHIRP team called yesterday and told us that her bloodwork from Monday looked great and they are confident in going to this next step which is to allow her to try and maintain her blood levels herself, without the aid of the IV infusions. We are praying that her body continues to be strong and that she will not need to go back on them. Bloodwork is scheduled for Monday and will continue to be weekly while we maintain her line at home.
At her appointment on the 28th, in two weeks, if all continues to go well, we will discuss/schedule a surgery time to get her line removed- This will be a procedure requiring anesthesia in the operating room. We must keep her line in at home for a few weeks while we make this transition because putting the line in (and taking it out) are major procedures and we want to be sure that she does not need the infusions.
Please continue to pray for sweet Mae while we take this major step forward in her treatment. We feel so fortunate to be loved and cared for by so many people. Mae is truly a miracle and she continues to show us daily just how special she is. Praise God!
'I will give thanks to you, Lord, with all my heart; I will tell of all your wonderful deeds.' Psalm 9:1
Thursday, November 1, 2018
Giving Thanks!
Thursday, November 1
Mae's medicine was reduced this week as the CHIRP team and her doctors at U of M are trying to slowly wean her off of her nightly infusions. She is continuing to gain weight and grow even with the reduction in her medicine. (She currently weighs 10.150 kg, which is a little more than 22 lbs.) This is fantastic news as it is showing that her body is handling the transition well. This is a slow process, but, it is nice to see the improvements and steady growth that is happening. Her blood work looked good this week, another encouraging sign. We will continue to have weekly blood draws and as her infusions are being reduced, we are increasing oral medications to keep her blood levels regulated.
Monday was a big day for our family as Mae got tubes in both of her ears and she had her annual brain MRI. This was a long procedure as she had a 'full' brain MRI, which took nearly 60 minutes. Both her tubes and the MRI were done under the same sedation so as to only have to give her anesthesia once- The nurses, doctors, staff, etc... at U of M are wonderful and explained everything in detail to Ryan and I. We are very fortunate to be under their care. Upon the completion of the procedure, we were told by Dr. Green, her ENT, that her ears looked good- no signs of infection or scarring- good indications for the health of her ears. We have not received any word of the MRI results but we are scheduled to meet with Dr. Garton, her neurologist, on November 28th.
Although Mae's procedure was successful, the day was long (and tiring) for everyone- especially Mae. In addition to the above, her line had been flushing 'hard' or 'sluggishly' so we saw an infusion nurse while we were at U of M. The nurse administered TPA (an anti clotting drug) into her line and it had to dwell for an extended period of time- The goal is that the drug broke up any/all blood clots or medicine clots that have accumulated in her central line. Prayers that Mae's line continues to be functional for the duration of its need are appreciated. We are hopeful that Mae can get her line taken out by the end of the year. What a blessing that would be!
UCLA contacted us yesterday and informed us that Mae's (and our) bloodwork has been completed/processed by Baylor University (that is who sequences the DNA in conjunction with the Undiagnosed Diseases Network) and that her medical case is set to be reviewed by the team/panel of doctors on November 15th. We will hear from UCLA after the review meeting with a formal plan for her clinical visit at UCLA with Dr. Martin.
There are so many emotions for our family right now as we reflect upon how much progress has been made in the last year. Everything is special to us- The fact we could all be together for trick or treating last night, the fact that Mae is at home and not in a hospital, the fact that we can sleep under the same roof, etc... All of these are 'small' things that many take for granted but we are so thankful. As always, we appreciate continued prayers for healing for Mae and prayers of perseverance for Mae's medical team. We are truly blessed.
"I will give thanks to you, for I am fearfully and wonderfully made. Your works are wonderful. My soul knows that very well." Psalm 139:14
Mae's medicine was reduced this week as the CHIRP team and her doctors at U of M are trying to slowly wean her off of her nightly infusions. She is continuing to gain weight and grow even with the reduction in her medicine. (She currently weighs 10.150 kg, which is a little more than 22 lbs.) This is fantastic news as it is showing that her body is handling the transition well. This is a slow process, but, it is nice to see the improvements and steady growth that is happening. Her blood work looked good this week, another encouraging sign. We will continue to have weekly blood draws and as her infusions are being reduced, we are increasing oral medications to keep her blood levels regulated.
Monday was a big day for our family as Mae got tubes in both of her ears and she had her annual brain MRI. This was a long procedure as she had a 'full' brain MRI, which took nearly 60 minutes. Both her tubes and the MRI were done under the same sedation so as to only have to give her anesthesia once- The nurses, doctors, staff, etc... at U of M are wonderful and explained everything in detail to Ryan and I. We are very fortunate to be under their care. Upon the completion of the procedure, we were told by Dr. Green, her ENT, that her ears looked good- no signs of infection or scarring- good indications for the health of her ears. We have not received any word of the MRI results but we are scheduled to meet with Dr. Garton, her neurologist, on November 28th.
Although Mae's procedure was successful, the day was long (and tiring) for everyone- especially Mae. In addition to the above, her line had been flushing 'hard' or 'sluggishly' so we saw an infusion nurse while we were at U of M. The nurse administered TPA (an anti clotting drug) into her line and it had to dwell for an extended period of time- The goal is that the drug broke up any/all blood clots or medicine clots that have accumulated in her central line. Prayers that Mae's line continues to be functional for the duration of its need are appreciated. We are hopeful that Mae can get her line taken out by the end of the year. What a blessing that would be!
UCLA contacted us yesterday and informed us that Mae's (and our) bloodwork has been completed/processed by Baylor University (that is who sequences the DNA in conjunction with the Undiagnosed Diseases Network) and that her medical case is set to be reviewed by the team/panel of doctors on November 15th. We will hear from UCLA after the review meeting with a formal plan for her clinical visit at UCLA with Dr. Martin.
There are so many emotions for our family right now as we reflect upon how much progress has been made in the last year. Everything is special to us- The fact we could all be together for trick or treating last night, the fact that Mae is at home and not in a hospital, the fact that we can sleep under the same roof, etc... All of these are 'small' things that many take for granted but we are so thankful. As always, we appreciate continued prayers for healing for Mae and prayers of perseverance for Mae's medical team. We are truly blessed.
"I will give thanks to you, for I am fearfully and wonderfully made. Your works are wonderful. My soul knows that very well." Psalm 139:14
Subscribe to:
Posts (Atom)