It is hard to believe it has been a year. This time last year I was wheeling back and forth between my room and the NICU to breastfeed Alli. Every three hours. My mom stayed with me through the night to make sure I could get back and forth and then we came back to the room to pump for 10 minutes after. We were so excited that she fed so well by mouth. Upon being discharged from the hospital the doctor in charge of the NICU commented that he had never seen a baby with Down Syndrome do so well. I think it is because we were so committed...from the start. There was all of the adjustment one would expect to the news as it unraveled over the course of my pregnancy and then over the course of the past year, but no matter what, I think we can safely say that we have risen to every challenge set before us and have done our best to give Alli the best life possible.
Today just seems surreal. We had an amazing celebration with extended family and part of me still can't believe that we are in Michigan, much less that Alli was in Chicago 2 weeks ago. We have come a long way since this time last year. Alli made it through the NICU without incident, endured a complete cardiac repair of 5 heart defects, has fought through multiple epilepsy medications to control infantile spasms, has had countless EEGs, participates in weekly physical and occupational therapy, has weathered two colds, and withstands her ng tube. Through all of this, she has an amazing spirit and is continuing to develop as her body allows. Jason and I saw her roll over 2 times this weekend. A developmental milestone we have been working on with her for months. She is amazing. Likewise, Jason and I are different people than we were a year ago. I have walked away from a career that once showed great promise for a job that gives me sanity. Jason has made sacrifices to be home for bedtime almost every night and spend time with us on the weekend. We have conquered multiple medications, learned how to insert feeding tubes, coordinated complicated treatment with multiple specialists, and have learned how to adapt to less than ideal circumstances so that we have a semblance of normal life for ourselves and the girls. We take advantage of opportunities to get out with eachother and the girls, knowing that good times can change to challenging times in an instant and without warning.
We know that the next year will bring new challenges. Alli will be getting a G-tube. We will be contacting a surgeon this coming week to schedule a consultation and then the procedure. Based on discussions with multiple specialists this seems to be the best option for Alli. We are already working with a feeding specialist in hopes to keep the tube in for as little time as possible. We love Miss Heidi and she is Midge approved! We will also be scheduling an appointment with an ENT to have Alli's adnoids checked. Her sleep study showed a mild obstruction and her oxygen sats have been at the low end of 90 - cardiology has ruled out shunting as a cause for this, so our next stop is the ENT to see if her adnoids are causing the problem. We will continue her treatment for infantile spasms and have an 8 hour EEG scheduled for July 16. Then - there is all the unknown. What I have learned over the past year is that no matter what - we can handle anything that is set before us. We have the support of wonderful family and friends and our faith grows more and more each day through this experience. We have experienced countless miracles - some that are known and some that are yet to be revealed and I'm sure there are a few that haven't been noticed but when I reflect back I often think to myself - wow - it was miraculous that...and another one comes to light. God is working with us every day.
So, thank you for everything you have done for us over this past year. For the many prayers, masses, novenas, well wishes, gifts for our daughters, visits to our home, phone calls, emails, blog comments, meals, and all of the other things that are escaping me in this moment. It all helps us to keep a semblance of a normal life and feel connected to you.
Samantha has been amazing - by the way. She is talking in sentences and is thoroughly enjoying having dance parties in the living room with us and Megan, her nanny. Her favorite is the Hot Dog Dance from Mickey Mouse Clubhouse. She turns around and says "Holy Cow, Mommy!" and says "again!" as soon as it is over. It melts my heart. She also loves tinkerbell and minnie/mickey mouse. She has had a few opportunities to hold Alli in her lap and loves to give her sister "big hugs." She enthusiastically helped her open her gifts this year and showed her (hand over hand) how to use many of them. They are so lucky to have each other.
Sisters
Sunday, July 1, 2012
Monday, May 28, 2012
Carpe Diem
It is cheesy, but it is the truth. Since things have started to steadily improve with Alli we have taken advantage of every opportunity we can to get the girls out of the house and get ourselves out of the house, as well. Our weekends have been full of good quality family time. We've taken the girls out to eat, gone to the pool, entertained friends, and managed to have a date night without stress. It has been wonderful. However long it lasts, it feels like a gigantic weight has been lifted from my shoulders. We still give Alli meds 3x day and she still has intermittent spasms (and a cold right now), but she hasn't vomited in over a week and she is making developmental strides every day. This weekend we have noticed her being much more vocal. She is definitely trying to communicate with us, which is something we haven't seen from her since before her surgery. She continues to try to roll over. She rolls consistently on to her side and will hang out there for a while, especially if I have her baby einstein turtle in front of her, but she hasn't been able to make the full rotation. It will happen any day, I'm sure.
Samantha has been venturing out for new experiences, as well. Last weekend I took her to mass with me for the first time in over a year. I was nervous about how she would do, as she demonstrates all of the most charming 2 year old qualities these days - tantrums, high pitched squealing, throwing herself on the floor, etc. To my surprise, she behaved very well. There was a moment of awkwardness when we walked in and got settled. She looked up on the alter, pointed, and exclaimed "King Cole!" She has a Wee Sing dvd at home called King Cole's Party and she evidently mistook the priest for King Cole. It's possible we need some more time reading "the Child's Guide to the Mass" and less time with King Cole's Party. Lately she has taken to calling us by different names. Mine aren't so exciting, however, she lovingly refers to Jason now as Jason Jay and also Baby Daddy. Baby Daddy came from dinner one night when she was naming everyone at the table and their relation to Alli. For whatever reason, Baby Daddy stuck, and now she uses it on a regular basis. She has also developed an affinity for shopping. This week, before school one morning, she came up to me as I was standing at the kitchen counter, tapped my leg, looked up, and said "Go to Target sweetie?" If only I could have scooped her up and driven her right over there. It melted my heart.
Jason and I finally made it out together. We ventured over to Local Three on Saturday night with our good friends. It was so nice to have a night out. It was great food and great company! I had to cancel plans with him a couple of weeks ago to see the Zac Brown Band because Alli was feeling so miserable. So, it was especially rewarding to be able to go out and know that she was just fine at home with Megan. Though, I would have loved the concert, I think I would have been distracted the entire night. I felt much more comfortable leaving on Saturday.
This week will be a busy one. Alli will start PT with her new in home physical therapist, Brittany, on Tuesday. Samantha has her end of the year party on Wednesday morning. Alli has OT on Thursday. We also need to work in a weight check with Dr. Blumenthal and blood work to see if she is having a negative reaction to the depakote. Depakote can cause liver toxicity, so her blood work will be managed regularly. Finally, Samantha has her last day of school on Friday. It has been such a great first year at Montessori. We're excited for her to go back next year and work her way in to the primary classroom. She will get to return in the fall as the Big Fish in the Toddler II pond and then will hopefully move around the middle of the year to the Primary room.
There have been many prayers of Thanksgiving over the last few weeks. I continue to say prayers to St. Anthony as we work through the treatment for infantile spasms, but we mostly focus on prayers of thanks for how far Alli has come and the peace that has taken over our house. Thanks so much for everyone's continued messages of support and prayers. They have been amazing and I'm certain give us the strength to get through days that seem never ending.
Jason and I finally made it out together. We ventured over to Local Three on Saturday night with our good friends. It was so nice to have a night out. It was great food and great company! I had to cancel plans with him a couple of weeks ago to see the Zac Brown Band because Alli was feeling so miserable. So, it was especially rewarding to be able to go out and know that she was just fine at home with Megan. Though, I would have loved the concert, I think I would have been distracted the entire night. I felt much more comfortable leaving on Saturday.
This week will be a busy one. Alli will start PT with her new in home physical therapist, Brittany, on Tuesday. Samantha has her end of the year party on Wednesday morning. Alli has OT on Thursday. We also need to work in a weight check with Dr. Blumenthal and blood work to see if she is having a negative reaction to the depakote. Depakote can cause liver toxicity, so her blood work will be managed regularly. Finally, Samantha has her last day of school on Friday. It has been such a great first year at Montessori. We're excited for her to go back next year and work her way in to the primary classroom. She will get to return in the fall as the Big Fish in the Toddler II pond and then will hopefully move around the middle of the year to the Primary room.
There have been many prayers of Thanksgiving over the last few weeks. I continue to say prayers to St. Anthony as we work through the treatment for infantile spasms, but we mostly focus on prayers of thanks for how far Alli has come and the peace that has taken over our house. Thanks so much for everyone's continued messages of support and prayers. They have been amazing and I'm certain give us the strength to get through days that seem never ending.
Saturday, May 19, 2012
I can't believe it has been 2 weeks since writing an update. It has been an eventful two weeks. As of right now, Alli is doing really well. It feels really good to be able to write that. We met with Dr. Flamini May 8 to review the results of Alli's 48 hour EEG and discuss medications. As of that time, she was in modified hypsarrhythmia and still having spasms. We made the decision during that meeting to pull Alli off of topamax and to put her on depakote. We started to wean her off of topamax May 9 and started the depakote the same day. We didn't notice much of a change the first few days. Alli had been and continued to vomit quite a bit with her feedings. We were down to feeding her 2 ounces every 2 hours, only if she was asleep, and completely avoided feeding her in the morning. On good days she was maybe getting 12 ounces of formula. Not good. We got the go ahead from Dr. Flamini to speed up the wean off of the topamax and to also pull back on her dose of vigabatrin. Finally on Sunday (Mother's Day) we started to see some progress. Alli spent the majority of the day sleeping, but she was starting to keep more food down. More progress on Monday, she continued to keep food down, and then Monday night started to show some personality. By Tuesday she was picking up her feet and trying to roll over on to her stomach. She has been more awake, alert, and in general seems to be much more comfortable. You can't imagine the relief. We saw Dr. Blumenthal on Thursday and had a lengthy discussion regarding whether or not to insert a G-tube and get rid of the NG tube. A G-tube is a more permanent feeding tube that is surgically placed in Alli's stomach. It is a minimum of a 3 month commitment but would relieve Alli of having the tube attached to her face. We are going to give it some thought. There are many advantages to taking this route. The one big disadvantage is that it would mean another surgery/anesthesia for Alli this year. We had an unanticipated visit with our friends at Sibley Heart Center on Friday. I took Alli in to have the placement of her liver checked - what I thought would be a 15 minute appointment. We left 2 hours later in the clear and off of heart medication...yeah!! They did an echo and said that Alli's heart function looks good and that she can go without both her lasix and her lisinopril. We also graduated to a 2 month check up. Excellent!
So, it is a somewhat exhilarating feeling to think that Alli may finally be turning a corner. Of course, I have to say we have really intensified our prayers over the past 2 weeks. My mom was here from May 8 - May 15 and she really kept us focused. She prayed with Alli and me daily and we invoked every person we could think of to help provide Alli some relief. In addition, on the Tuesday of Alli's appointment with Dr. Flamini, I started a novena to St. Anthony. As it turns out, St. Anthony, who often gets credit for helping me find my car keys and other valuable items, is also the patron saint of lost causes and miracles. So, I started the novena to him asking for him to intercede on Alli's behalf for a cure of her epilepsy.
Today we ventured out to Summerville, GA to the First Montessori School year end picnic. It was quite the adventure. Mostly it was an opportunity for us to test the waters with Alli on the road. We are hoping to be able to take a couple of trips with her this summer, so we wanted to see how she did in the car, how it was feeding her on the road, etc. Both girls did remarkably well. We had a nice time at the picnic. Samantha was excited to see her teachers, Sanuja and Danielle, and ran around with her friend Salena. She has really enjoyed school and I think will be sad for the summer break. They tell us that she likes to stand at the door and greet everyone in the morning. She not only knows all of the children in her class, but she knows their parents and nannies, as well. This is most definitely a trait she gets from her outgoing father. In the car today when we would pass trucks she would say "scuse me truck!" She also has been expressing her opinion very freely these days. While driving home from school one day, Samantha clearly did not appreciate Megan's (her nanny) singing and said "Meggie, please stop sweetie." We also enjoy getting kisses from Samantha. She has picked up on the 'mwah' sound of a kiss, so now, when she "kisses" us, she gets close to our cheek or head and says 'mshmah.' We have to be very careful these days as she repeats much of what we say.
Tuesday, May 1, 2012
The results are partially in...
Just a quick update - Dr. Blumenthal called this afternoon to let us know that Alli only has mild reflux...yeah! So, we have ruled out reflux as the cause of her vomiting and we have temporarily eliminated one of her medications.
Will let you know when we hear about her other tests.
Will let you know when we hear about her other tests.
Wednesday, April 25, 2012
Updates 4/25-4/28
Well, we had an early start to our day today. Alli and I were on the road to Scottish Rite by 6:30 and checked in at day surgery by 6:55. Our nurse, Beth, was able to get Alli's ph probe inserted without a problem. We had a quick X-ray to check placement, made a small adjustment, and went on our merry way. Over the next 24 hours we will track when we feed her, her position, and any episodes of vomiting. The results will help us determine the extent of Alli's reflux and what her treatment options are...pharmaceuticals vs. fundoplication. This will also help us, in conjunction with her EEG, to understand if it is the reflux that is causing her to vomit, or if it is correlated with seizure activity.We are currently waiting in the EEG lab for a patient room to open up on the floor and then we will get her hooked up and started with the 48 hour video EEG monitoring. Our hope with the video EEG is to be able to capture various events that occur during Alli's day to see if they are seizure activity or something else. If it is seizure activity it should register on the EEG. We will also confirm that she is still out of hypsarrhythmia and whether or not she is having myoclonic seizures. We are hoping they are able to get good data and that we can either continue our current course of treatment, or make some modifications, if necessary.More to come...
Well, we are in a room and all hooked up. So far Alli has had 2 vomiting episodes, so there has been a lot of action on the ph probe front. She has been resting since they attached the leads to her head, so not much action on the neurology front. Dr. Flamini will be by this afternoon for a visit. Jason spent the morning with us, which was very nice! I have all of my buttons ready to go. :)
It has been a busy day. We have pushed our red button a lot. We had a good conversation with Dr. Flamini. It was a characteristically not so great day for Alli. I am hopeful that she will have a better day tomorrow so that they can see how dramatically she can swing from one day to the next. Tonight she will have a sleep study. So we will be able to see if sleep apnea plays in to this at all. Below is a shot of what the EEG looks like while she is sleeping right now.
Everybody had a decent night last night. We had an unexpected visit from Livie's mom, Lettie. It was definitely nice to have some company and more than a few good laughs.
This morning they took out Alli's ph probe, drew some labs, and reconnected some of her EEG leads. I spoke with Dr. Flamini and Alli's EEG appears to show some modified hypsarrhythmia. He is going to spend some additional time with it and then we'll talk again. If that is the case, then we will likely max out on our dose of vigabatrin and see how that works over a 10 day period. In the meantime we will wait to hear from Dr. Blumenthal on the results of the ph probe.
We did not have the sleep study last night.
On a side note, there is a little boy with Tourette's down the hall that has been squeaking like a high pitched bird this morning. Pray for him and his mom. I suspect that her days spent dealing with that are really a challenge. Perspective is a wonderful thing.
We are in the home stretch! Alli's sleep study is under way. I have to say that whoever devised this test should have to walk around for the rest of his life (because no woman would have thought of this and then suggested it as a good idea) with a piece of tape on his top lip. I can't even believe she fell asleep, but truly by the grace of God she did. We will be discharged tomorrow morning.
As of now we are increasing Alli's vigabatrin to 500 mg in the am and pm. I suspect she will be in hibernation much of the weekend. She has 10 days to 2 weeks to see if that works and then we will reevaluate options, which right now appears to be depakote. Based on his preliminary impressions it appears that her IS is morphing in to another form of epilepsy, as she had multiple seizure events with a frontal lobe focus. These events were manifested primarily by eye fluttering.
We are waiting to hear from the GI on the outcome of the ph probe.
Below are some photos of Alli from earlier today and one of her connected for her sleep study. She had a great afternoon. Thanks for all of the prayers and well wishes. We feel so blessed to have such supportive family and friends.
Just waiting on our discharge paperwork and we will be on our way!
Well, we are in a room and all hooked up. So far Alli has had 2 vomiting episodes, so there has been a lot of action on the ph probe front. She has been resting since they attached the leads to her head, so not much action on the neurology front. Dr. Flamini will be by this afternoon for a visit. Jason spent the morning with us, which was very nice! I have all of my buttons ready to go. :)
It has been a busy day. We have pushed our red button a lot. We had a good conversation with Dr. Flamini. It was a characteristically not so great day for Alli. I am hopeful that she will have a better day tomorrow so that they can see how dramatically she can swing from one day to the next. Tonight she will have a sleep study. So we will be able to see if sleep apnea plays in to this at all. Below is a shot of what the EEG looks like while she is sleeping right now.
Everybody had a decent night last night. We had an unexpected visit from Livie's mom, Lettie. It was definitely nice to have some company and more than a few good laughs.
This morning they took out Alli's ph probe, drew some labs, and reconnected some of her EEG leads. I spoke with Dr. Flamini and Alli's EEG appears to show some modified hypsarrhythmia. He is going to spend some additional time with it and then we'll talk again. If that is the case, then we will likely max out on our dose of vigabatrin and see how that works over a 10 day period. In the meantime we will wait to hear from Dr. Blumenthal on the results of the ph probe.
We did not have the sleep study last night.
On a side note, there is a little boy with Tourette's down the hall that has been squeaking like a high pitched bird this morning. Pray for him and his mom. I suspect that her days spent dealing with that are really a challenge. Perspective is a wonderful thing.
We are in the home stretch! Alli's sleep study is under way. I have to say that whoever devised this test should have to walk around for the rest of his life (because no woman would have thought of this and then suggested it as a good idea) with a piece of tape on his top lip. I can't even believe she fell asleep, but truly by the grace of God she did. We will be discharged tomorrow morning.
As of now we are increasing Alli's vigabatrin to 500 mg in the am and pm. I suspect she will be in hibernation much of the weekend. She has 10 days to 2 weeks to see if that works and then we will reevaluate options, which right now appears to be depakote. Based on his preliminary impressions it appears that her IS is morphing in to another form of epilepsy, as she had multiple seizure events with a frontal lobe focus. These events were manifested primarily by eye fluttering.
We are waiting to hear from the GI on the outcome of the ph probe.
Below are some photos of Alli from earlier today and one of her connected for her sleep study. She had a great afternoon. Thanks for all of the prayers and well wishes. We feel so blessed to have such supportive family and friends.
Just waiting on our discharge paperwork and we will be on our way!
Saturday, April 21, 2012
Obstacles to Trust
When you are dealing with science and prayer it is sometimes hard to differentiate where your trust lies. Certainly I am praying for Alli to have relief, but I have to trust in her doctors to help bring her that relief through various tests, treatments, medications, etc.
Over the course of the past few weeks we have really struggled to keep food and medicine in Alli and at times she just looks down right miserable. That isn't even an exaggeration. We are feeding Alli 2 oz. at a time every couple of hours in hopes of just getting her minimum daily requirements in to help keep her hydrated and help her tolerate her seizure medicine. We haven't been able to figure out what is causing her discomfort - is it seizures? is it respiratory? is it digestive? Her symptoms haven't been consistent and we have played with the variables every way we can think of to help alleviate the situation. So, earlier this week, we had our monthly check in with Dr. Blumenthal, our GI specialist. Given our most recent struggles with Alli's ability to tolerate food he suggested that we have a ph probe done during Alli's 48 hour EEG. A ph probe is dropped through her remaining free nostril in to her stomach and measures the stomach acid to determine the extent of her reflux. In order to run the test she has to be off of reflux medicines for 5 days and they will give her 2 apple juice feeds. Now, I have never thought Alli had reflux, but I do follow doctor's orders and have given her 2 doses of reflux medicine every day since she was admitted to the hospital back in November. Therefore, watching her spitting up/projectile vomiting get worse over the course of these weeks, I was very hesitant to pull her reflux medicine. What if her vomiting got worse and she dehydrated? What if she couldn't keep her seizure medication down? What if I was wrong all along and she really does have reflux and this is the one thing that is helping her? How could it possibly be safe and ok to pull reflux medicines in a child who was already spitting up/projectile vomiting on a regular basis? I actually articulated all of these things to both our neurology nurse, Gigi, and our GI nurse, Janet. I also went so far as to suggest that they just admit Alli to the hospital, pull her meds, and keep her there for monitoring, as I was sure this would be a disaster and she would be dehydrated and in some form of constant state of seizure due to all of the circumstances mentioned above. So, yesterday I pulled her reflux medicine in the morning and she has now gone almost 36 hours without it. Since then we have noticed a reduction in spit up and she has tolerated all 3 rounds of medicine. I am hopeful that this pattern continues as for the first time, in a long time, she seems much more comfortable to me. She is still having intermittent spasms and we will address those this coming week, but for the time being, she seems more comfortable and that was all I really wanted.
So, how does trust fit in to all of this and to whom do I assign responsibility for what has transpired over the last day and a half? Well, earlier this week, I specifically prayed that the Lord would inspire both Dr. Blumenthal and Dr. Flamini to be able to work through this and help Alli. They in fact are very good friends and honored my request to consult with each other and with both GI and neurological impacts considered, they decided this test was the way to go. So, I had no other recourse but to trust that they made the right decision and that the Lord would take care of us. Either Alli would tolerate the reduction in medicine ok, or that He would make it such that we could get her treated quickly and safely, if necessary, over the weekend. What was the obstacle to trust? Fear. I was afraid that this decision would result in a situation that I couldn't handle and would cause Alli further distress. So, how do you balance overcoming the obstacle to trust and doing your job as an advocate and making sure the doctors hear your concerns and take them in to consideration? I find myself questioning our doctors all the time. When you're dealing with so many specialists for 30 minutes at a time, it is hard to make them understand what the full picture looks like outside of their office. I have no doubt that every one of them wants to help Alli (and probably go halves on a hit man for me) and I usually leave with some additional suggestion for treatment or medicine, but what I really want is for someone to look at her full picture and try to connect the dots. Someone who can look at her cardiac tests, neurology tests, GI tests, and medicines, and try to correlate what is responsible for what is going on with her so ultimately we can provide her with a safe way to not feel miserable all the time. In this instance, I asked my questions and communicated my concerns and at the end of the day was left with the decision of the people who I have to trust have Alli's best interests at heart and have been inspired to make the ultimate decision. So we move forward confident in that decision and face the fear associated with her treatment, and so far He is taking care of us, most importantly Alli.
Living away from family is hard. It always has been. I enjoy Atlanta, but miss being surrounded by family and friends from home very much. We were fortunate this past week to be visited by my cousin on her way back from Florida and our dear friends Raylene and Len Yarnell. We had a wonderful visit with Angela and Steven. Raylene and Len showed up just in the knick of time with that feeling of home. They stayed with us for two nights and I have to say, they left us better than they found us. Samantha and Len were fast friends and Raylene was a much needed source of motherly support for me during a very trying week. We love having company, even when times are stressful and hope to have many more visitors.
Samantha is doing well. She is challenging at times, but we are working through it. She continues to be quite the little baker at school and brings us biscuits and pumpkin bread almost every day. The ducks in our local park have really enjoyed her biscuits (which can often resemble hockey pucks), but we keep the pumpkin bread for ourselves. It is really quite delicious! She enjoys referring to herself and others as 'Sweetie' and 'Sweetie Pie.' It is quite humorous when she refers to adult men this way.
So, coming up this week, we have a cardiologist appointment on Tuesday, complete with Echocardiogram, the 48 hour EEG, and the ph probe. It should be quite a week and hopefully one that will bring us some answers regarding Alli's seizures. Oh yes, and let's not forget our PT and OT appointments. Never a dull moment :)
Have a good week!
Over the course of the past few weeks we have really struggled to keep food and medicine in Alli and at times she just looks down right miserable. That isn't even an exaggeration. We are feeding Alli 2 oz. at a time every couple of hours in hopes of just getting her minimum daily requirements in to help keep her hydrated and help her tolerate her seizure medicine. We haven't been able to figure out what is causing her discomfort - is it seizures? is it respiratory? is it digestive? Her symptoms haven't been consistent and we have played with the variables every way we can think of to help alleviate the situation. So, earlier this week, we had our monthly check in with Dr. Blumenthal, our GI specialist. Given our most recent struggles with Alli's ability to tolerate food he suggested that we have a ph probe done during Alli's 48 hour EEG. A ph probe is dropped through her remaining free nostril in to her stomach and measures the stomach acid to determine the extent of her reflux. In order to run the test she has to be off of reflux medicines for 5 days and they will give her 2 apple juice feeds. Now, I have never thought Alli had reflux, but I do follow doctor's orders and have given her 2 doses of reflux medicine every day since she was admitted to the hospital back in November. Therefore, watching her spitting up/projectile vomiting get worse over the course of these weeks, I was very hesitant to pull her reflux medicine. What if her vomiting got worse and she dehydrated? What if she couldn't keep her seizure medication down? What if I was wrong all along and she really does have reflux and this is the one thing that is helping her? How could it possibly be safe and ok to pull reflux medicines in a child who was already spitting up/projectile vomiting on a regular basis? I actually articulated all of these things to both our neurology nurse, Gigi, and our GI nurse, Janet. I also went so far as to suggest that they just admit Alli to the hospital, pull her meds, and keep her there for monitoring, as I was sure this would be a disaster and she would be dehydrated and in some form of constant state of seizure due to all of the circumstances mentioned above. So, yesterday I pulled her reflux medicine in the morning and she has now gone almost 36 hours without it. Since then we have noticed a reduction in spit up and she has tolerated all 3 rounds of medicine. I am hopeful that this pattern continues as for the first time, in a long time, she seems much more comfortable to me. She is still having intermittent spasms and we will address those this coming week, but for the time being, she seems more comfortable and that was all I really wanted.
So, how does trust fit in to all of this and to whom do I assign responsibility for what has transpired over the last day and a half? Well, earlier this week, I specifically prayed that the Lord would inspire both Dr. Blumenthal and Dr. Flamini to be able to work through this and help Alli. They in fact are very good friends and honored my request to consult with each other and with both GI and neurological impacts considered, they decided this test was the way to go. So, I had no other recourse but to trust that they made the right decision and that the Lord would take care of us. Either Alli would tolerate the reduction in medicine ok, or that He would make it such that we could get her treated quickly and safely, if necessary, over the weekend. What was the obstacle to trust? Fear. I was afraid that this decision would result in a situation that I couldn't handle and would cause Alli further distress. So, how do you balance overcoming the obstacle to trust and doing your job as an advocate and making sure the doctors hear your concerns and take them in to consideration? I find myself questioning our doctors all the time. When you're dealing with so many specialists for 30 minutes at a time, it is hard to make them understand what the full picture looks like outside of their office. I have no doubt that every one of them wants to help Alli (and probably go halves on a hit man for me) and I usually leave with some additional suggestion for treatment or medicine, but what I really want is for someone to look at her full picture and try to connect the dots. Someone who can look at her cardiac tests, neurology tests, GI tests, and medicines, and try to correlate what is responsible for what is going on with her so ultimately we can provide her with a safe way to not feel miserable all the time. In this instance, I asked my questions and communicated my concerns and at the end of the day was left with the decision of the people who I have to trust have Alli's best interests at heart and have been inspired to make the ultimate decision. So we move forward confident in that decision and face the fear associated with her treatment, and so far He is taking care of us, most importantly Alli.
Living away from family is hard. It always has been. I enjoy Atlanta, but miss being surrounded by family and friends from home very much. We were fortunate this past week to be visited by my cousin on her way back from Florida and our dear friends Raylene and Len Yarnell. We had a wonderful visit with Angela and Steven. Raylene and Len showed up just in the knick of time with that feeling of home. They stayed with us for two nights and I have to say, they left us better than they found us. Samantha and Len were fast friends and Raylene was a much needed source of motherly support for me during a very trying week. We love having company, even when times are stressful and hope to have many more visitors.
Samantha is doing well. She is challenging at times, but we are working through it. She continues to be quite the little baker at school and brings us biscuits and pumpkin bread almost every day. The ducks in our local park have really enjoyed her biscuits (which can often resemble hockey pucks), but we keep the pumpkin bread for ourselves. It is really quite delicious! She enjoys referring to herself and others as 'Sweetie' and 'Sweetie Pie.' It is quite humorous when she refers to adult men this way.
So, coming up this week, we have a cardiologist appointment on Tuesday, complete with Echocardiogram, the 48 hour EEG, and the ph probe. It should be quite a week and hopefully one that will bring us some answers regarding Alli's seizures. Oh yes, and let's not forget our PT and OT appointments. Never a dull moment :)
Have a good week!
Friday, April 13, 2012
Philosophy
Today I told my mom, "some days (today, for example) I feel like I'm living a college philosophy thesis paper." The premise for my statement came from the end of a broadcast I was listening to on the way in to work. Yes, a few times a week I listen to EWTN on the way in to work. In fact, I made Jason renew our previously free Sirius subscription just so I could listen to EWTN. Anyway, the topic of today's discussion was the HHS mandate and the requirement to provide free coverage for prenatal testing. A seemingly innocent enough offering, until you start to examine some of the statistics associated with the outcome of prenatal testing. First of all, prenatal testing does not just cover screening for genetic abnormalities. I will acknowledge that there are several beneficial outcomes from prenatal testing, including glucose screening for gestational diabetes, tracking fetal weight, etc. However, it must also be acknowledged that one of the most negative outcomes of prenatal testing is the decision to terminate pregnancies where there is the possibility of genetic abnormality. So, I am not going to get on a high horse about abortion. Thankfully, Jason and I never even had that discussion. But, when I look at our experience with prenatal testing I struggle with whether I would do it again. We can't forecast and prepare for everything. Certainly we can prepare ourselves for some things, but not everything. And so, I sort of find that at times, I resent what the testing didn't show. I was prepared for heart issues and down syndrome,but seizures and brain damage have thrown me for a loop. And isn't it that way with all children? So, all of your genetic prenatal testing is normal, but then your child develops an illness, or has an accident, then what? I almost feel like dealing with the unexpected when you have no expectations is far easier than dealing with the unexpected when you think you have the blueprint laid out in front of you. So, I'd like to say that I wouldn't do it again. I'd like to say that this experience has taught me that we are in this to be parents to whatever kind of child we are blessed with raising, that the peace of mind that everything is "normal" is in fact temporary and limited. Only time will tell.
Alli is doing well. She has had a busy couple of weeks. She finally met with the infamous Dr. Jeannie. Some of you may remember Dr. Jeannie from an earlier post. She is a developmental pediatrician that specializes in Down Syndrome and she consulted with me by email the weekend Alli was initially admitted for her infantile spasms. She has been an invaluable resource to us, especially where referrals are concerned. I also feel that she is the one physician that looks at Alli globally. Our pediatrician has made it very clear that he can only deal with general pediatrics - coughs, colds, strep throat, etc. our specialists are good for their specialty but can be guilty of tunnel vision. So, I view Dr. Jeannie as Alli's personal Dr. House. We left our visit with a referral to a pulmonologist, sensory therapist, ear, nose, and throat specialist, and speech therapist. Pulmonology and Sensory were the immediate to-do's. ENT and speech are intermediate to-do's.
From a general development perspective things are going well. Alli is rolling from her tummy to her back and she is transferring objects from hand to hand. We continue to work on supported sitting and head control. She abandoned bottle and spoon feeding with her upper respiratory infection, but did manage to take some applesauce off of the spoon earlier this week. We met with the feeding specialist who feels that once we have her more medically at bay that her oral feeding skills will return. So, we will continue to try to feed her by mouth and be thankful that we have the feeding tube to supplement her for both nutrition and her meds. We are seeing lots of smiles from Alli these days. They steal my heart, even when they are followed by a spasm. We continue to struggle to control her spasms. It seems based on her personality and developmental progress that the hysparrhythmia has not returned, however, she is definitely still having jerks that resemble myoclonic seizures. We increased her dose of topamax this past week and will increase it again next week in the hopes of getting that under control. Alli will have a 48 hour eeg and sleep study April 25-27. This should hopefully give us greater perspective about her seizure activity. Next week we have an appointment with GI, PT, and OT. We also have a meeting with our new Service Coordinator from Babies Can't Wait and we'll have a developmental assessment done on Wednesday (yeah!!). I am very excited about our new service coordinator.
Everyone else here is doing pretty well. We enjoyed our visit with my parents and Aunt JoAnne. We also enjoyed a visit with Uncle Tom and Aunt Linda. We had a Sunday dinner the likes of which I wish I could have every weekend. We grew up with family dinners at my grandparents, or having grandparents at our house, and I miss that. So, to have all of that family around my dining room table was so awesome. To have Aunt JoAnne here was humbling. Though we are in different stages of life, we share much in common. She brought me a book "Jesus Calling." It has daily reflections. She told me that at times it felt like it was speaking directly to her. I have to say that I share that same sentiment. Each day I read a reflection and follow up with my novena to Padre Pio. Both have been sources of inspiration in terms of lending perspective to day to day life in our house. We had a nice Easter. Our friends John and Valerie joined us for brunch. Later in the afternoon Samantha and I had a date at Peachtree Dekalb airport. She has been obsessed with planes, so we visited the playground near the airport so she could swing and watch the planes take off and land. She also enjoyed her Easter basket and Easter egg hunt. Her dad (the Easter bunny) lovingly (and skillfully, I might add) hid her eggs in the front yard. She was super excited to open them and discover her treats - underpants, cheddar bunnies, and gummy bunnies.
We look forward to visiting with my cousin Angela and her husband Steven tomorrow and Raylene and Len Yarnell on Wednesday night! Alli also has her first play date tomorrow...yeah!!
Have a great weekend!
Alli is doing well. She has had a busy couple of weeks. She finally met with the infamous Dr. Jeannie. Some of you may remember Dr. Jeannie from an earlier post. She is a developmental pediatrician that specializes in Down Syndrome and she consulted with me by email the weekend Alli was initially admitted for her infantile spasms. She has been an invaluable resource to us, especially where referrals are concerned. I also feel that she is the one physician that looks at Alli globally. Our pediatrician has made it very clear that he can only deal with general pediatrics - coughs, colds, strep throat, etc. our specialists are good for their specialty but can be guilty of tunnel vision. So, I view Dr. Jeannie as Alli's personal Dr. House. We left our visit with a referral to a pulmonologist, sensory therapist, ear, nose, and throat specialist, and speech therapist. Pulmonology and Sensory were the immediate to-do's. ENT and speech are intermediate to-do's.
From a general development perspective things are going well. Alli is rolling from her tummy to her back and she is transferring objects from hand to hand. We continue to work on supported sitting and head control. She abandoned bottle and spoon feeding with her upper respiratory infection, but did manage to take some applesauce off of the spoon earlier this week. We met with the feeding specialist who feels that once we have her more medically at bay that her oral feeding skills will return. So, we will continue to try to feed her by mouth and be thankful that we have the feeding tube to supplement her for both nutrition and her meds. We are seeing lots of smiles from Alli these days. They steal my heart, even when they are followed by a spasm. We continue to struggle to control her spasms. It seems based on her personality and developmental progress that the hysparrhythmia has not returned, however, she is definitely still having jerks that resemble myoclonic seizures. We increased her dose of topamax this past week and will increase it again next week in the hopes of getting that under control. Alli will have a 48 hour eeg and sleep study April 25-27. This should hopefully give us greater perspective about her seizure activity. Next week we have an appointment with GI, PT, and OT. We also have a meeting with our new Service Coordinator from Babies Can't Wait and we'll have a developmental assessment done on Wednesday (yeah!!). I am very excited about our new service coordinator.
Everyone else here is doing pretty well. We enjoyed our visit with my parents and Aunt JoAnne. We also enjoyed a visit with Uncle Tom and Aunt Linda. We had a Sunday dinner the likes of which I wish I could have every weekend. We grew up with family dinners at my grandparents, or having grandparents at our house, and I miss that. So, to have all of that family around my dining room table was so awesome. To have Aunt JoAnne here was humbling. Though we are in different stages of life, we share much in common. She brought me a book "Jesus Calling." It has daily reflections. She told me that at times it felt like it was speaking directly to her. I have to say that I share that same sentiment. Each day I read a reflection and follow up with my novena to Padre Pio. Both have been sources of inspiration in terms of lending perspective to day to day life in our house. We had a nice Easter. Our friends John and Valerie joined us for brunch. Later in the afternoon Samantha and I had a date at Peachtree Dekalb airport. She has been obsessed with planes, so we visited the playground near the airport so she could swing and watch the planes take off and land. She also enjoyed her Easter basket and Easter egg hunt. Her dad (the Easter bunny) lovingly (and skillfully, I might add) hid her eggs in the front yard. She was super excited to open them and discover her treats - underpants, cheddar bunnies, and gummy bunnies.
We look forward to visiting with my cousin Angela and her husband Steven tomorrow and Raylene and Len Yarnell on Wednesday night! Alli also has her first play date tomorrow...yeah!!
Have a great weekend!
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