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
Wednesday, October 17, 2018
Take heart!
Update: October 17, 2018
At this time last year we were pretty much trying to survive day to day- Mae had been admitted to U of M for 23 days and, little did we know, we weren't even a third of the way through the admission. At that time she was just an infant, sleeping most of the day and oblivious to the medical teams that were surrounding her, machines that were helping strengthen her weakened body, nurses that kept constant watch, and family/friends who helped Ryan, the boys, and I make it through that long, difficult stretch.
Fast forward to today and the miracle that Mae is cannot be overstated. She is doing so many things that we were so uncertain of a year ago. She has a formula that she can drink, food that she can eat, the ability to crawl, roll over, and walk, sounds that babble from her sweet lips, squeals of delight that literally could bring you to tears, and the simple recognition of her family. Although we are realistic to understand that her medical future is still largely unknown, we are comforted by the many milestones she has met and the fact that she continues to grow and develop. God is good.
Results from Mae's swallow test last Friday confirmed that when she is drinking 'thin liquid' (formula, water, etc...) she is having episodes where the liquid is penetrating her airways but she is able to 'protect' them and there is no evidence of aspiration. Therefore, we will continue to feed her using a preemie size nipple to ensure the flow of liquid from her bottle is slow enough not to choke, gag, or cause aspiration. There will be a follow-up study done in two months.
Mae was re-evaluated by our local school district last week and she was found to be doing great in some areas and is showing delays in others. We will be creating a formal Individual Family Service Plan this week to ensure that we are getting all necessary resources to help Mae reach her full potential. Therapists and coordinators will be starting twice a week home visits with Mae in the next week or so. We are hopeful that these additional resources will benefit her.
Mae 'failed' another attempt at switching her formula to the Pediasure blend- We will continue to use her Ross Carbohydrate Free formula with the addition of fructose (which is what we have been doing.) She continues to be able to tolerate these feeds and is doing very well with the mixture. She currently weighs a little more than 21 pounds and her blood work this week shows that she is doing well with the switch of TPN to her dextrose hydration/medicine. Fantastic news! We will continue to have weekly blood draws so that the CHIRP team can assess her.
We went to a local apple orchard over the weekend and it was really great. All three of the kids love being outside in the fresh air and the simple fact that we can all be together is not taken for granted. As always, we truly appreciate everyone's prayers and kind gestures, we know that each and everyone of you have your own lives, and yet, you take time to check on us and pray for us. We are certainly grateful and blessed.
"I have told you these things, so that in me you may have peace. In this world, you will have trouble! But, take heart! I have overcome the world." John 16:33
Friday, October 5, 2018
Moving forward...
Friday, Oct. 5
Mae will be taking a major step forward today in her intestinal healing process- Her TPN medication is being tweaked to include a dextrose solution base instead of the corrosive TPN base. This is incredible news and something that we have been working toward since being put on TPN nearly one year ago. Mae's eight hour medication cycle and infusion pump will remain the same, but, her solution bag will be different. In a 'perfect' world, and if all things go as planned, there is the potential for Mae to be off of this medication and have her Broviac port removed around Christmas- What a blessing that would be! Mae will be getting weekly blood draws, from our home health nurse, to monitor her levels as we start to make this transition.
Mae will be getting tubes placed in her ears at U of M on Monday, October 29th. She has not had any ear infections, but, she has failed two hearing tests since June and her ear drums are not functioning properly. We are hopeful that the tubes will improve Mae's hearing and encourage her speech to develop. Currently Mae does not have any words that she uses, she does babble and make sounds, but there is no connection with her speech and everyday objects/people. Within 24 hours of the surgery we have been told that Mae's hearing will improve significantly- As we approach this date we will be so appreciative of prayers for strength during the procedure and prayers of healing after.
Mae has a 'swallow test' at U of M next Friday, the 12th, to examine/explore issues that she is having with swallowing certain liquids, particularly water. This will be a follow-up study to a procedure that was done over the summer.
Regarding Mae's formula, we will be working toward switching her over from her specialized formula to Pediasure Grow & Gain. We attempted to start this change last week and Mae did not handle the transition well, she vomited and was sick for nearly three days. We will give this transition another attempt in the coming week. We will be starting slowly- Mixing 25% Pediasure to 75% formula. We are hopeful that in the next few weeks to a month that we can completely transition off of her formula and strictly onto the Pediasure Grow & Gain.
As always, we truly appreciate the prayers, thoughtful messages, reaching out to see how we are doing, cards, etc... We are blessed, beyond measure, to be parents to Mae, Will, and Luke. God is good and we are thankful.
'And let the peace of Christ rule in your hearts, to which indeed you were called in one body. And be thankful.' Colossians 3:15
Mae has a 'swallow test' at U of M next Friday, the 12th, to examine/explore issues that she is having with swallowing certain liquids, particularly water. This will be a follow-up study to a procedure that was done over the summer.
Regarding Mae's formula, we will be working toward switching her over from her specialized formula to Pediasure Grow & Gain. We attempted to start this change last week and Mae did not handle the transition well, she vomited and was sick for nearly three days. We will give this transition another attempt in the coming week. We will be starting slowly- Mixing 25% Pediasure to 75% formula. We are hopeful that in the next few weeks to a month that we can completely transition off of her formula and strictly onto the Pediasure Grow & Gain.
As always, we truly appreciate the prayers, thoughtful messages, reaching out to see how we are doing, cards, etc... We are blessed, beyond measure, to be parents to Mae, Will, and Luke. God is good and we are thankful.
'And let the peace of Christ rule in your hearts, to which indeed you were called in one body. And be thankful.' Colossians 3:15
Monday, September 17, 2018
Resuming regular schedule...
9/17/17: Whew! What a wonderful summer we had! Lots of updates so I will be ‘brief’ with this post as I plan to resume a regular posting schedule!
Mae was accepted to the Undiagnosed Disease Network program at UCLA in California. We will be meeting with Dr. Martin Martin, the world renowned congenital diarrhea specialist sometime this fall/winter. Currently, we are in the process of waiting for our (Ryan, myself, and Mae) full DNA to be sequenced (we submitted bloodwork in June). We are in contact with our study coordinator at UCLA and will know more about our visit to California once DNA sequencing is complete and they have planned our clinical visit, probably not until later in October. This is amazing news and definitely deserves prayers of thanksgiving. We are fortunate to have this resource and are thankful for the CHIRP team at U of M for putting us in contact with UCLA. All of Mae’s medical team is searching for answers/links/explanations! Please continue to pray for them as we try all venues to help her/further research for her condition(s).
Regarding her TPN: Mae is on an 8 hour cycle of TPN that makes up nearly 10% of her daily caloric intake! Again, GREAT news! She has an expanded (but still very limited) diet that includes: meats, sweet potatoes, green beans, bananas, carrots, mangos, blueberries, squash, oatmeal, and a few other items. We are beyond happy that she has options for food and that she is doing well with her specialized formula and diet. She is growing and we are getting close (2-4 months, hopefully) to coming off of the TPN. She needs to continue to grow and maintain her weight in order for this to become a reality.
Mae has remained healthy with the exception of a hospital admission at U of M over Labor Day weekend. She spiked a 103.0 degree fever which is MAJOR cause for concern because of her central line/port. Bacteria cultures came back negative and it was determined that she simply had a virus. (Any fever over 99.5 requires a hospital admission for 48 hours to determine if there is an infection in Mae’s blood/central line.) Thank goodness she did not have an infection! She is feeling better now and we’re trying to put back on the weight that she lost while we were admitted- The antibiotics that were given were really hard on her little body.
Mae will be reevaluated by our local school district in the coming weeks to determine if there are any cognitive/motor/social/verbal delays right now. We will work together with Early On to address any of the deficiencies. She will also be going to U of M this week for a hearing test and next week to meet with the CHIRP team.
On August 24th Mae celebrated 365 glorious days! She is officially one year old! She weighs nearly 21 lbs. and has 8 teeth! She is starting to walk short distances without any assistance! She continues to be enthralled with Will and Luke as much as they are with her. She gives kisses willingly and smiles all of the time. She knows what she wants and expects things when she wants them! She wiggles for diaper changes and has truly made all of ours lives better. She is a God given miracle and we could not be more in love with her.
The Lord has done great things for us, and we are filled with joy. Psalms 126:3
Thursday, May 24, 2018
Our hearts are full...
Update May 24, 2018
Mae is 9 months old today and what a whirlwind of 9 months it has been! We have been so blessed to have this little girl in our lives and are truly, from the top, bottom, and middle of our hearts thankful for all of the love, support, and prayers that we have been blessed with. It is really difficult to picture our lives before Mae and the immensely meaningful impact she has had on our family, the boys, and our friends. We are continually amazed at the true miracle that Mae is and the genuine happiness and excitement that she has for life.
Developmentally, Mae continues to be on track or nearly on track with meaningful milestones as she appears to be making progress with both gross and fine motor skills. Neurologically, she is functioning as an average 9 month old with no obvious brain related concerns. She is a miracle!
Malabsorptionwise, the CHIRP team has tweaked her TPN to include more calories for growth and electrolytes to keep her balanced. Our team of doctors at U of M are consulting with Dr. Martin Martin at UCLA in California as he is the leading expert in the United States with congenital diarrhea. We are hopeful to try a new treatment option within the next couple of weeks to reduce her stool output: consistency and frequency. As we continue to seek answers for Mae's health issues, prayers for guidance for the doctors that are helping Mae are appreciated. We are beyond fortunate to be cared for by the CHIRP team with weekly conference calls and emails about Mae's progress. Dr. Steien and the team show genuine concern for Mae's well being and they have been nothing short of a God given blessing for Mae and our family.
Mae weighs nearly 18 pounds (44th percentile) and is 27 inches (54th percentile). She has two bottom teeth and is enjoying her bottle, pureed meats, eggs, olive oil, and avocado. She is sitting independently, standing with balance support, and is attempting to scooch/crawl around. She is a persistent little one and knows exactly what she wants and when she wants it. Will and Luke adore her more each day as they take time away from their own playing to talk to her, play with her, and genuinely show her pure love. God is good and our hearts are full.
God is within her, she will not fall; God will help her at the break of day. Psalms 46:5
Mae is 9 months old today and what a whirlwind of 9 months it has been! We have been so blessed to have this little girl in our lives and are truly, from the top, bottom, and middle of our hearts thankful for all of the love, support, and prayers that we have been blessed with. It is really difficult to picture our lives before Mae and the immensely meaningful impact she has had on our family, the boys, and our friends. We are continually amazed at the true miracle that Mae is and the genuine happiness and excitement that she has for life.
Developmentally, Mae continues to be on track or nearly on track with meaningful milestones as she appears to be making progress with both gross and fine motor skills. Neurologically, she is functioning as an average 9 month old with no obvious brain related concerns. She is a miracle!
Malabsorptionwise, the CHIRP team has tweaked her TPN to include more calories for growth and electrolytes to keep her balanced. Our team of doctors at U of M are consulting with Dr. Martin Martin at UCLA in California as he is the leading expert in the United States with congenital diarrhea. We are hopeful to try a new treatment option within the next couple of weeks to reduce her stool output: consistency and frequency. As we continue to seek answers for Mae's health issues, prayers for guidance for the doctors that are helping Mae are appreciated. We are beyond fortunate to be cared for by the CHIRP team with weekly conference calls and emails about Mae's progress. Dr. Steien and the team show genuine concern for Mae's well being and they have been nothing short of a God given blessing for Mae and our family.
God is within her, she will not fall; God will help her at the break of day. Psalms 46:5
Subscribe to:
Posts (Atom)