A really good day...

I had almost forgotten what it felt like to have a really good day...until today.

Today was busy, but what day isn't busy around here?  We had an opthamologist appointment scheduled for the morning, as well as an impromptu neurologist appointment - the follow up to yesterday's EEG.  Prior to leaving the house I decided to finally take the bull by the horns and call the director of Babies Can't Wait to discuss our miserable experience with them to date.  Much to my surprise, the director of the program was extremely helpful and is going to get a new service coordinator placed in our house.  She spoke with me for probably 30 minutes and was extraordinarily patient in listening to my concerns and helping to develop ways to address them.  Assuming there is good follow through, I feel like we might be able to get our early intervention services back on track.

Our opthamology appointment was productive.  Alli's vision has improved since our last visit.  We will continue to monitor her vision and see the doctor again in 3 months.  He noted that she had some intermittent nystagmus while we were talking.  Nystagmus can be common in children with Down Syndrome, but it can be difficult to determine its true source.  Given the damage to Alli's brain, time will potentially tell whether the nystagmus is a result of the Down Syndrome or the brain damage.

Now for the news we have all been waiting for!!  Alli's EEG!  We had a great experience at the neurologist yesterday for the EEG.  This test (despite being minimally invasive) has upset Alli in the past, mostly due to the process of attaching the leeds to her head.  Our EEG tech yesterday was amazing.  She had a few tricks for making that process more comfortable for Alli and they worked like a charm.  I was so grateful.  I met with the neurologist today.  Her EEG was much improved since her last scan in February.  He feels that the hypsarrhythmia has resolved, however, her scan still shows intermittent seizure and other abnormal activity.  I feel as though my prayers to Padre Pio have been heard and answered.  I will continue the novena as I find it helps to keep things in perspective right now.  So, for now, it seems the infantile spasms are again at bay.  We will continue to monitor her from a neurological perspective due to the other abnormal activity.  The neurologist feels that there is a possibility that that can improve over time, so we will pray that that is the case and take it one day at a time.

Both girls seem to be battling some chest congestion.  It doesn't seem to be upsetting them too much, so we'll keep tabs on that for the time being.  In the meantime, we are looking forward to the arrival of my mom and dad and Aunt JoAnne this weekend.

Thank you so much for all of your prayers this week.  They really do help!

Where to start...this is the 3rd time I have started this entry tonight.  There is much to say about the time since my last entry.

Alli has been working her way through an upper respiratory infection.  It was bound to happen at some point.  While I'm sure some of you are referencing my earlier post and wondering where St. Raphael was in all of this, I have to say that Saturday afternoon Alli started running a fever.  It was 102.8 under her arm and 103.8 rectally (I am the person who checks to make sure the thermometer works and insists on the rectal temperature...as if Alli doesn't already have enough going on).  I ran out to get some dye free tylenol (at the advice of another mother whose child had infantile spasms and warned me about red dye and the potential to trigger seizures in people with epilepsy).  I came home documented the previously discussed temp, blessed Alli with the St. Raphael oil, and gave her her tylenol.  Her fever never came back.  Say what you will...maybe it was the tylenol...I think it was the oil.  Since then, she has been struggling with nasal and chest congestion.  The nasal congestion has been particularly problematic, so we have reverted back to feeding her via the ng tube.

My start date with UPS was moved from Monday to Wednesday.  So, I was blessed to have another couple of days with the girls.  Monday was a good day.  Alli was smiley and happy.  I even managed to capture her on FaceTime with my parents so they could see her breakthrough in personality.  We had a quick trip to the pediatrician to discuss said upper respiratory infection.  All was good.  Then, it was like she slipped right through my fingers.  By Tuesday, Alli's smiles were gone.  She was still having spasms and she was starting to withdraw.  She was pretty out of it during her physical therapy session Tuesday afternoon and was barely awake during occupational therapy on Thursday.  The doctor has increased her seizure medication to 750 mg which makes her pretty tired.  Over the course of the past few days we have seen glimpses of her personality coming back, but they are pretty short lived.  I am hopeful that the latest increase in medication will knock this out.  We have an eeg on Thursday to check the status of her hypsarrhythmia.  I am praying it is gone.

Samantha is fully embracing the spirit of being 2.  Lately she enjoys screaming and jumping - sometimes she enjoys doing both together.  Everything involves jumping.  We're trying our best to work on inside voices, especially while Alli is sleeping or around the time that we give Alli her meds.  Her latest quips include "so funny!" and "whatsa going on?"  (I think maybe we've been watching too much of the Real Housewives of New Jersey).  The former she uses in context when we laugh at something she does.  The latter, in and of itself, is just cute and funny.  She often walks in to the room and asks us "whatsa going on?"  I crack up every time.  We spent Saturday morning planting flowers, vegetables, fruit, and herbs in her garden at school.  It was a wonderful way to enjoy the beautiful spring weather we have been having.  

As for me, it has been a mixed week.  I definitely had days where I wanted to pull the sheets over my head in the morning, go back to sleep, and pray that these struggles with Alli would miraculously be over when I woke up.  I had a lot of those mornings.  My start at UPS has gone well.  Each person that has greeted me has always asked right away how Alli is doing.  If it wasn't the first thing out of people's mouths, it was definitely the second.  They have been so kind and understanding about her needs and their impact on my schedule.  It has been nice to have something else to focus on.  Megan T. has done an admirable job of taking on Alli's challenges.  It can be difficult at times to manage Alli's feedings, especially on days when she doesn't tolerate them well, but Megan has really stepped up.  We are so lucky to have her.  In the midst of all of this I started (and finished today) a novena to St. Padre Pio.  I started the novena in hopes that he would intercede in bringing the end to Alli's seizures.  However, over the course of the nine days, the prayers and reflections brought a different perspective to the struggles we face with Alli on a daily basis.  Specifically the 5th and 6th days of the novena.  The prayers on Day 5 ask for an increase in suffering in order to convert and save sinners.  The prayers on Day 6 convey the willingness to take on suffering in order to free someone else of their suffering.  Both days resonated with me.  Though our days can be difficult, each day we find the strength to meet the challenges set before us, even the days where we think we can't possibly bear seeing another spasm or waiting out the meds.  Every time I think she is getting better, only to see her have a spasm, it is like someone is squeezing my heart.  All that being said, if I knew that those days took suffering away from my loved ones, or would lead to the conversion of those that are close to me, I would find the strength to continue on and persevere through them.

I am hopeful that the week ahead will bring us good news.  Please keep us in your prayers, especially on Thursday!  We will continue to pray for you, as well!

Quiet Week

This has been a quiet week for Alli. We only had 2 scheduled appointments - with the GI and physical therapist. We of course had to add in an obligatory impromptu visit over to the cardiologist. During her PT session Alli's saturation levels dropped in to the high 80s and low 90s. This is lower than normal for her, so I brought her upstairs to be checked out by our favorite nurse practioner, Patti. Patti also happens to own an accessory store in Dunwoody called Bellissimo. It is in the Dunwoody Village and has some fabulous (and fabulously priced!) accessories. I highly recommend, not only because I am a fan of locally owned businesses, but because Patti has been an exceptional friend to Alli. If you do go in, make sure to tell her Alli sent you :)

Not much to report from the GI. Alli's appetite has tanked and I spent the good part of Monday and Tuesday trying to diagnose why. I gave up on Wednesday after resolving that she must be reacting to coming off the prednisolone. This hypothesis has been confirmed by many (including a few doctors). She will continue to check in with the GI every 2 weeks for weight checks and we'll see him again in a month to discuss all things food and weight related.

Last night we gave Alli a treat and let her sleep without her ng tube in. I managed to clog up the other one with one of her medicines (a less essential one) so we pulled it out. Once it was out we had some good cuddle time and she gave me some cute reassuring smiles as if to say..."thanks, mom." I think she was also saying "please don't put it back in." I had mixed emotions as I sat there and thought about how we would have to put the tube back in this morning. I enjoyed seeing her fact without the tape and tube. She fell asleep on me...something she hasn't done in ages. There have been lots of tender moments over the past couple of days. The tube went back in without incident this morning. I look forward to the day when it is gone forever. In the meantime I will appreciate it for the fact that it helps me give her all of her medicine (except for the taurine, which clearly turns to toothpaste when mixed with water).

Next week we have a visit with Dr. Campbell, our cardiologist, physical therapy, a barium swallow study, and occupational therapy. The barium swallow study will help us determine if Alli can start to tolerate thin liquids. If so, then we get to start discussing removing the feeding tube.

Samantha had some funny moments this week. In an effort to help curtail her whining/crying my mom has told Samantha that there is "no crying unless real tears." This message has clearly hit home for Samantha as she told Snickers the other night at dinner, as he was crying to be let out, "Snickers, no crying unless real tears." I about spit out my food at the table. From time to time I also let her help me cook. This week I learned that when cooking with Samantha one has to watch her very closely. As we were preparing the broccoli to be steamed she was assigned the role of taking the broccoli I cut from the stem and putting it in the pot. She dutifully put the first few pieces in the pot, then I noticed that she started to snack on the next few pieces (in theory a wonderful thing!). Then, as I was cutting a few more pieces for her, I noticed her starting to put her half eaten broccoli in to the pot. SO - word to the wise - Samantha will have to be watched around all raw vegetables and likely all dips :) She also warms my heart with her "thank you's." (not to be confused with my often forgotten or late thank you notes.) Samantha has really become wonderful and saying "thank you" at the appropriate time and even say's "you're welcome" if you forget to say "you're welcome" back to her. My favorite is when she thanks the garbage men for taking the trash. She stands by the window in our living room and watches as they pull up to take the garbage. She almost always announces their arrival. Then she yells "thank you!" as they drive away. I hope I never forget that. She does some of the most sweet and innocent things.

Jason and I are doing well. I will start a contract position on Monday at UPS. Monday is also the Feast of St. Joseph (so, thank you St. Joseph for bringing this opportunity forward).

Some days I wonder how much longer some of this will go on. Constantly watching Alli to see if she is having spasms. The feeling of disappointment even if she just has one or two. Setting the 30 minute timer to be sure she has kept all of her meds down. Having to readjust positioning after feeding in hopes of avoiding an episode of spitting up. There are days when it all gets old. But, just as I think to myself, and often say to God, "this is enough," well, usually then something wonderful happens. Watching Alli smile at me last night was wonderful. They are the same reassuring smiles she used to give me when she was weeks old and I used to wonder if she was getting enough to eat. I have always interpretted them as her way of telling me that everything is alright and not to worry. As I sit here, she is sitting in her yellow bed moving her arm back and forth. She rubs her face from time to time and then goes back to the toy in her lap. It doesn't mean that there aren't more challenges down the road, but for the time being, things will hopefully calm down and I know God is listening.

Great Weekend!

Well, we had a really wonderful weekend. We had a special visit from my friend Adrianne and her daughter Cecilia. They drove all the way from Columbus to spend part of the weekend with us. We were able to check out the Center for Puppetry Arts, the playground at Centennial Park, Johnny Rockets, and the park near our house. It was the first time in a long time that Samantha and I were able to venture out for a date to somewhere other than the grocery store or Willy's.

The Center for Puppetry Arts was an interesting experience. Samantha enjoyed seeing Big Bird and Elmo, as they have the Jim Henson puppets on display. The group wasn't a huge fan of the puppet show itself. The Adventures of Little Noodle was somewhat disappointing in its message on food choices and body image. The girls were well behaved and I would definitely go back with a little more research in to the puppet show ahead of time.

The playground at Centennial Park was amazing. I had no idea how extensive it was. The girls had a fun time exploring the various apparatus, riding the swings, and running through the wide open green space. I will definitely plan on taking Samantha and Alli down there more often. It was well worth the cost of parking.

Cecilia and Samantha are only 3 days apart in age. They were fast friends and had a great time together.

It was sad to see our friends go this morning, but we wish them a safe journey on to Birmingham, Memphis, and New Orleans.

Alli enjoyed some fun family bonding time with Daddy while we toured around the city. She has had a pretty good weekend. We are still seeing intermittent spasms, but she seems to be getting some personality back. She has been cracking a few smiles and smirks at us and has been more engaged in her toys. We gave her the last dose of prednisolone and increased her dose of vigabatrin at the end of last week. We will continue to go up on the vigabatrin until we see the spasms stop completely. We'll see how the next couple of days go.

I spoke with the neurologist regarding the results of her MRI last Thursday. Her scans show that she is microcephalic and has micro hemorrhages on her brain. I need to look at a copy of the MRI report in order to interpret what all of that means, but for the time being it means that her scan wasn't completely clean. Her cardiac scan looked better than the doctors anticipated. We will discuss that with them in greater detail at our appointment on the 20th.

We hope everyone had a nice weekend and has a great week!

Enjoy the attached pictures!

Medically Fragile?

Shortly after Alli was born, Jason and I joined the Down Syndrome Association of Atlanta. Ar the time I felt it was like the Golden Key National Honors Society or Beta Alpha Psi, just something you did if you qualified for it. I never imagined how invaluable this decision would become. From the DSAA we learned about DADS, which, as you might guess, is a group of Dads that have children with Down Syndrome. They meet once a month (over beers, of course) to discuss what is going on with their children, share pertinent information about what is going on in the down syndrome community (both local and at large), plan fundraisers, and ultimately share advice and resources. I mentioned to Jason that he might think about going and was pleasantly surprised when he agreed to check it out. Thanks to his involvement in this group, we learned about infantile spasms from an email chain. Ultimately that helped us to obtain Alli's initial diagnosis and seek immediate treatment.

The DSAA also puts out a regular newsletter. When Alli was in the hospital back in January I happened to be reading through the articles and came across a narrative written by another DSAA member whose daughter had suffered through infantile spasms and had congenital heart defects. She described her daughter as 'medically fragile' and was speaking to the lack of support resources within the down syndrome community for families of medically fragile children with down syndrome. I remember debating with my mom about whether Alli was 'medically fragile' enough for me to reach out to this mother. I felt like maybe we had caught everything just in the nick of time enough with Alli to avoid status as 'medically fragile.' Once Alli was readmitted to the hospital again in February with the relapse of infantile spasms I decided that she had at that point met the quota to be considered 'medically fragile' and indeed reached out to this mother. What a wonderful support she has been! She understands what it is like to go through this. She shares resources. She checks in on me to see how things are going. She is truly an angel in disguise. The week I met her she organized a dinner at her home for Jason, me and Alli to meet two other families of children with DS and IS and we sat and talked over pizza about heart surgeons, neurologists, various courses of treatment, therapies, etc. It was amazing and something I will be forever grateful for.

I am hopeful that at some point, in the somewhat near future, we will be able to enjoy other aspects of the DSAA. They host wonderful social and educational events for families. I am also hopeful that I will have the courage, as this other mother did, to reach out to other families that have medically fragile children and help them see the light at the end of a very dark tunnel.

Speaking of light in the tunnel...we are seeing some hopefully good results from the vigabatrin. This week we have noticed Alli starting to track objects and faces again on a pretty consistent basis. She has periods of occasional vocalization. AND it appears as though she is trying to smile again. Today, Megan told me she rolled from her back to her side without any assistance. All of these are indicators that things should be moving in the right direction. Please pray that we stay on this path and are able to completely eliminate these seizures from ever coming back. We are still witnessing occasional mild jerks, but they are becoming more mild and infrequent.

In other good news, Alli was able to complete her MRI yesterday. She made it through anesthesia with flying colors and had 3 different scans. She had a scan of her brain and orbits, a cardiac scan, and a scan of her brain and orbits with contrast. We should hopefully have the results from the neurologist at our appointment tomorrow and from the cardiologist at our appointment in a couple of weeks. Thank you for all of the prayers that were said for her yesterday.

Samantha continues to do well. She is sad that her "nanny" (grandma) is gone, but looks forward to another upcoming visit soon! She is starting to talk in sentences now, as opposed to one word phrases. Her latest is "I hold you." Which means she wants me to pick her up. She seems to take what we say to her and apply it to the correct situation. We are trying to help her understand the difference between I, you, and me.

Until next time...