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!

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!

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!