Mommy, when I grow up I want to work in a restaurant.
Ok Soph, what do you want your job to be in the restaurant… the cook, a waiter, the table setter, dishwasher…
No Mommy, I want to be the balloon maker!
We eat at too many kids eat free restaurants.
I love weekends, I wish they were longer! I love being home all together as a family. I love that we eat big breakfasts late in the morning, hoping to fill the kids up so that we can go on an adventure with all of them before they need to eat again. Almost always someone is hungry again before we even arrive at our destination. This weekend our weather was cold and rainy, but we enjoyed it nonetheless. We spent the better part of today in our pajamas catching up on a few things around our house, this was just what we needed. This kids had a blast playing together. They made “stuff” out of cardboard boxes and paper. Jack made a ship similar to what the immigrants traveled to America in complete with steerage, the part of the ship where the “thrifty” people traveled. They have been doing a big heritage project in social studies at his school, can you tell it has made an impression? Sophie and Megan made houses for their vast array of stuffed animals that are all named after some of their closest friends, I don’t think that there is much resemblance to the actual people though. It is so fun to watch the interactions amongst them. When the kids are laughing about something Lucy now tries to laugh with them, even though she has no idea what they are laughing about. How cute is that!
Last week was busy and full of ups and downs. On Tuesday we took Lucy back to CHOP for an appointment with her metabolic doctor and geneticist. I don’t know why we thought that this appointment was going to be any different than any other appointment we have had with them in the past. Maybe we were hoping that they would be more helpful to us now that we have Lucy’s biopsy report back from Dr. Shoffner, sadly they were not. Without going into too much detail, Lucy’s metabolic doctor questions or disagrees with some of the recommendations that Dr. Shoffner has made for Lucy. This put Drew and I in a very uncomfortable situation. Our focus for Lucy has and will always be to get her the best possible care and treatment that we can find. We feel that continuing care with CHOP Metabolism is not in Lucy’s best interest at the moment. However, we do feel that all of Lucy’s health care needs are currently being met, and that her health is being managed by some of the best doctors and specialists in our area who are very interested in helping our Lucy! They did order another series of metabolic labs to be drawn on Lucy. While I was sitting in the lab yet again holding our tiny girl, the tears started flowing. Lucy can now shake her head “no” when she doesn’t want something, when she looked up at me and shook her head “no” with big tears coming out of her eyes I could not hold back what felt like a years worth of emotion. We will continue to hope and pray that we find the right doctors, treatments, etcetera for our little girl.
After all of that emotion we still had to take Lucy back to interventional radiology to have her tube looked at. This was the last thing we wanted to have done, but it had to be fixed. They scanned her belly and found the tube to still be in place, but because she was experiencing dumping syndrome they pulled the tube and placed a shorter one instead. The hope is that by making the tube shorter and placing it closer to the opening of the jeoujenoum it will allow the body more time to absorb the food. In theory this makes perfect sense, however for Lucy it’s not working. Whenever we have fed her through her j-tube she has diarrhea. We have switched back to g-tube feeds and will discuss this with her GI doctor and nutritionist in more detail this week. Today we noticed bleeding around her site, it looks like we are dealing with granulation tissue again and possibly another infection. I drew a circle around the redness and will keep and eye on it to see if it spreads. Overall she is not acting too “off”, but she has been sleeping a lot recently.
Despite all of the medical stuff, our girl has been making progress in her vocalizations. She can sometimes say dada and baba when you ask her to, this is huge! She very rarely vocalizes anything but these sounds are deliberate and have meaning to her. In her music class we chant rhythms saying “ba, ba” Lucy repeated these sounds in class several times. Her OT came with us to class last week, perhaps she was trying to show off a little to Kris. We were all impressed!
This week will again be loaded with medical appointments. We will be at DuPont three days this week. We are scheduled for seating clinic on Tuesday morning to pick up her new pediatric wheelchair. Thursday we see cardiology for a full workup which they told us would be a three hour appointment. After that we head upstairs to neurology to have her hooked up for her 24 hour ambulatory EEG. Friday we return to have the the leads taken off and to turn in the transponder.
I said in an earlier post that we are going to have to schedule in some serious fun when all is said and done this month, and serious fun is what I am planning for our family. I will let you know more about what we are planning in upcoming posts. As for now, please pray that we all continue to stay healthy and that we continue to be reminded of what is truly important in our lives so that we stay focused in the midst of all of that we have going on. Thank you so much for all of your thoughts, prayers, and support we can not even begin to tell you how much they mean to us!
Yes, I’m trying to make an effort at celebrating the everyday, so happy Monday! This week we have several doctors appointments (that will take up most of a day), a trip back to CHOP to have Lucy’s tube fixed and/or replaced, soccer practice and a game, therapy times three, music classes times four, Jack’s heritage day at school on Friday morning, a session with an infant massage therapist(Lucy loves massage), a meeting for parents of special needs children, several play dates, a birthday party, shopping to find pants and shoes that fit Megan and Jack (WOW have they every grown!), a trip to Costco where I will attempt to stock up on food and supplies for the next three weeks, and all of the other things that need to get done in a week despite what we have on our calendar. Life is busy, but good!
In the midst of all that we have going on we are really trying to celebrate each and everyday in our house. Sounds corny, just try it! It can be something as simple as giving an extra long hug in the morning, writing a “love” note to one another, calling my husband for no apparent reason or to say that I need to have the battery in the car replaced soon-hint hint, stopping to “really look” at one of the thousands of things that Sophie points out to us in a day, or doing really anything that makes this day just a little more special. Today I had a car picnic with Sophie as I was running errands to try and find pants for the big kids. She thought it was "AWESOME”, and I loved that I did not have to unbuckle Lucy and eat in the restaurant. I also put a sweet surprise in the big kids afternoon snack containers that really made their day. Being conscious of making each day special really does make a difference! This may sound silly to talk about, but life should be celebrated and enjoyed everyday, don’t you think! Sure I am dreading the barrage of appointments this month, but tomorrow I am going to do something to make a very long day just a little special for everyone in our family! Life is_____, you fill in the blank!
I wasn’t sure Friday was ever going to come this week, we are looking forward to this weekend! Lucy has been awake for only three of the last 24 hours, she is really wiped out! She went to sleep for the day at 4:00 yesterday and I woke her this morning at 9:30 for therapy. She is very floppy and unable to stand on her own today. We are always surprised when she regresses like this, but we have learned that regression is not uncommon for mito kids. We are hopeful that with more sleep and nutrition that she will get back to baseline soon. Of course we are going to keep a very close eye on her, if things get worse we will be in contact with her doctors. Needless to say, I was up every few hours last night just checking on her to make sure she was doing alright. I am looking forward to taking a nap sometime this weekend.
We joined the United Mitochondrial Disease Foundation during Mito Awareness Week and since then we have been getting lots of information about the foundation and all of it’s fundraising efforts. This weekend our local UMDF chapter is hosting an Oktoberfest and we are going to join them in the fun and festivities and maybe meet some local families who are dealing with similar issues. It should be fun for our entire family, it was about this time last year that Drew and I were in Munich enjoying Oktoberfest .
Saturday
I was going to finish writing this post last night and then publish it, but we fell asleep right after we put the kids to bed. Lucy’s balance was slightly improved after she took a five hour nap. I was able to sit her down on the ground and not have her tip over. I’m going to take that as a sign of improvement. After feeding into the j-tube for the last 24 hours Lucy is dealing with diarrhea. This is what we were hoping would not happen, this is known as dumping syndrome. This is most likely happening because the rate at which we are feeding her is too fast, not allowing her body to absorb the nutrients. We are running her at the rate we fed her through her g-tube. One of the main reasons for getting the j-tube was so that we could increase the feeding rate, and get her growing at a more optimal rate. We are going to have to reevaluate our plans. She also managed to pull her J-tube out about three inches, the design of the tube is not ideal but it is the best they have for little ones Lucy’s size. Somehow I knew when I saw the finished tube that it was not going to last very long, but I wasn’t expecting it to come out this soon.
Our kiddos were exhausted today and not terribly anxious to leave our house. Lucy slept for nearly six hours this afternoon, which meant that we did not go to the Oktoberfest that we were looking forward to. This is the kind of adjusting that we have learned to do, the old us would have woke the sleeping baby and convinced the kids to buckle up in the van and go out on an adventure. I think that the new us is realizing that sometimes the best laid plans sometimes need to be put to rest, literally!
After a very long day of waiting and soothing, and waiting and soothing, and soothing and soothing some more Lucy is now a not so happy owner of a GJ tube. Her new hardware is…well…BIG! I was hoping that her new tube would be a little bit smaller than her PEG, it’s not. It is more flexible, but it’s longer and heavier, and has a very large W port on the end. I know that it is new and we need some time to adjust to it, but it is bigger than I thought it was going to be.
Interventional radiology was naturally behind schedule today. As a result, we had to start an IV of D10 because of Lucy’s fasting restrictions. Somehow I knew when I scheduled this appointment that she was going to end up with an IV, even though they told me it is not necessary for the procedure, they could push all the sedation meds through her g-tube. After getting her started on IV fluids, it was another hour before she was taken back for her procedure. Needless to say, we were relieved that they had started her on fluids. It was very difficult handing her over to the nurses to take her back. It is one of the most difficult moments for us as parents to see our baby girl so sad and scarred and not being able to comfort her. They gave her Versed and Motrin for the procedure. They commented afterwards that she has a very high tolerance and may need a little more Versed than recommended for the next time. They called me back to the sedation room immediately after her procedure was over because she was so distraught. I’m not sure who was happier to see me, Lucy or the team of nurses and doctors trying to calm her. The team was extremely compassionate and did an wonderful job of getting us out of there as soon as she was cleared to go home. We left with Lucy’s hospital gown still on her. Her nurse did not want to do anything more to upset Lucy than was absolutely necessary, we could all appreciate that!
It is getting increasingly difficult to have any procedures done to Lucy! She is extremely aware of the hospital environment and all that goes on inside of it. She is our hero, she has learned strategies for coping that amaze us! I am not sure the pain and frustration of placing this new tube is going to be worth the few extra ounces that could be gained by feeding through the J-tube. Time will tell, as for now I am happy that we do not have to do this again for another three months.
We want to say a HUGE thank you to Beth and Alicia for once again taking care of our kids like they are your own. We could not do all that we have to do without your support. Alicia, thanks for the bottle of wine, you can blame any typos in this post on that:)
Thanks again for all of your thoughts and prayers.
P.S. I was not able to take any pictures of her new tube as she was wrapped to my body most of the day. I’ll try tomorrow.
Please tell me I’m not the only one who is surprised by this. This week is the start of our marathon of appointments and procedures. If you ask me what I have to do this week or even tomorrow, I don’t think that I could tell you without looking at my calendar. This morning I took a look at what was on our agenda and by the afternoon I had already forgotten that we had therapy at 3:45 pm. We quickly pushed the toys over and made room for therapy. I think this is a sign that we have either too much going on, or maybe I need to take whatever that supplement is that people take to improve their memory. If only I can remember what that’s called.
Drew and I were able to go out to dinner alone on Saturday night! How you ask did we manage that? Thanks to our friends Beth and Andy, we took turns watching each others kids this weekend so that we could each have a night out. Even better than that, Beth convinced, or more like lectured me into leaving Lucy with them. Beth can be forcefully convincing when she needs to be, so I agreed to leave Lucy too. She did amazing and so did Lucy:)! We were ALL surprised with Lucy’s behavior, the kids even commented on how well behaved Lucy was. Hopefully, we can do this again soon.
Recently we have been blessed with several offers of help and support for our family. We are overwhelmed ,in a good way, by the generosity of the people who have offered to help our family. It is not always easy accepting help, we feel that we should be able to do it all, but we are learning to allow others to help us in a time of need. Our schedules are overflowing right now and it is nice to know that we have a little extra help on the days when we are bombarded with medical stuff. Thank you!
Just wanted to share with you an opportunity to support the UMDF.
Help Support the UMDF by Shopping at Macy's on Saturday, October 17th.
Purchase a Shopping Pass Here:
http://www.umdf.org/shopforacause
Help the United Mitochondrial Disease Foundation by participating in Macy's Nationwide Shop For A Cause event on Saturday, October 17th 2009.
With your shopping pass you can:
How It Works:
This exclusive shopping pass can be redeemed at any Macy's on Saturday,October 17th.(The downtown stores in Pittsburgh, St. Paul, Minneapolis, Boston, St. Louis, Miami and Gainesville, FL, will hold their events on Friday, October 16).
By purchasing a shopping pass to the event you can support UMDF while enjoying a day of spectacular discounts, entertainment and special events.
Deadline to register is Monday, October 12th. We will mail your tickets to you.
For more information please contact events@umdf.org
