School Days

School is back in session for our “big kids”.  I have to admit that I  have mixed emotions about school starting, I am sad that another summer is over and our freedom of doing what we want when we want to do it has ended.  School starting means we have to change gears and go back to a strict schedule again.  On the flip side, this year for the first time; I have to say that even thought I am sad about summer being over, I am happy to have a routine again.     It’s going to be a good year for them, I can feel it!  Jack is in the third grade this year.  How can I be the mother of a third grader?  His best friend since babyhood and he are in the same class together for the first time since preschool.  It’s a good thing.  Paul once said to Jack, “Jack you and me are like peas and carrots!”  They really are, they complement each other well and I  am so glad that they can share this experience.

 

Megan is in the first grade this year, she is gone from home all day for the first time in her life!  Megan has the same teacher that Jack had for first and and second grade and we are thrilled that she will be in this class for the next two years!  Half of her class knows Jack because he was with them last year, they have said to Megan that she looks like the girl version of Jack.  She loves school, especially being able to eat lunch at school.   I must confess that I miss having my “little mama” with me during the day.

Sophie and I have had some extra “special” Mommy and Sophie time this week.  On Monday she and I had a great time baking cookies and other goodies  for an afternoon snack for the kids, we played with puzzles, and went out to lunch together and Lucy too.  Lucy has been sleeping a lot recently, waking up for the day at around noon which gives Sophie and me some quality time.  On Tuesday morning she waved good bye to the kids and than turned around and said “Now we can have some special Mommy and Sophie time” and slammed the front door.  Sophie starts her preschool next week.

Lucy is not in school obviously, but we have therapy three times a week which is a commitment.  She is making progress and we are so proud of our girl!  She is really learning and retaining the signs we are teaching her each week.  It is so amazing to see her sign for help when she needs it!  Her six month review for therapy is coming up, when I think back we have really come a long way in the past six months. 

Next week we add after school activities to our schedule, at least we don’t have any doctor’s appointments scheduled.

Live and Learn (a long over due update)

We are still here, I just haven’t had much time to blog recently.  To be honest, I have had a difficult time finding the right words to describe what we have been feeling.  We are working at grasping what getting Lucy’s diagnosis means.  Since I last posted we saw Lucy’s neurologist.  She discussed with us what she thought of Dr Shoffner’s report, she agreed with his recommendation to start Lucy on on the Lecovorin as well the mito cocktail.  She also discussed the results of Lucy’s EEG.  Seriously, I was kidding when I wrote about  her EEG coming back abnormal because she had a tantrum when they placed the leads on her head, but abnormal findings are what we have.  We discussed doing a 24 hour ambulatory EEG in the next month or two to get a better idea of what Lucy has going on inside her head.  We all agreed to give Lucy a break from the hospital setting as well as any testing for the next few weeks,  she deserves one! 

Since her neuro appointment I have spent A LOT of time trying to get Lucy the medications she has been prescribed.  You would think that I could just go to the pharmacy, drop off the scripts, and pick them up when they are filled, think again.   Lucy has been prescribed a very specific brand of CoQ10, she can only use this brand as it is the only CoQ10 that is absorbed correctly in mito patients.  Of course our pharmacy does not carry this brand, we need to go through the process of having them supply it so that insurance will pay for it.  We need letters of medical necessity for the CoQ10 so that insurance will cover the cost of the medication.  Dr Shoffner’s office has sent us the needed documentation for our insurance, now we need to contact our case manager at Blue Cross and have her do her job.   We have also had issues with the Leucovorin, it comes in two forms a pill and an injectable.  After many conversations between her doctors and the pharmacy, it has been decided that we will use the pill form of the Leucovorin which means that we will need to grind the pill into a fine powder, dissolve it in water, and push it through her g –tube three times a day.  I ordered a pill grinder from a medical supply company, hopefully we can start Lucy on the Leucovorin just as soon as our pill grinder arrives.  Live and learn, right!

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On a totally different subject, Sophie celebrated her fourth birthday last Wednesday!  Four, oh my where has the time gone?  Sophie had a very royal (and very hot) birthday, she celebrated her day at Dutch Wonderland a local children’s amusement park.  Sophie is growing up and is a very beautiful, courageous, strong willed, very funny,  intelligent, determined, loveable little girl!  Her fourth year has a lot in store for her and we are looking forward to experiencing with her all that life has to offer her!

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The last few weeks have been full of events and activities in our house, again another reason for my lack of blogging.  We have been to museums, parks, pools, playgrounds, gone on picnics, the movies, the beach, eaten numerous ice cream cones, had our fair share of pizza, visited the inner harbor in Baltimore, went to Erie to visit family, biked, walked, strolled, and scooted around our neighborhood.   We are learning to adjust to Lucy’s needs and adjusting our daily life to fit her needs as well as meeting the needs of our other kids.  We avoid the heat as best as possible,  allow her to sleep as much as her body requires, and keep her daily routine as routine as possible.  Some days are better than others, but hey live and learn.  We have done our best to eek out the last few weeks of summer before the kids go back to school tomorrow!

Antibiotics are a Good Thing

We are all singing the praises of antibiotics in our house this weekend!  Lucy is feeling better than we have seen her in a while.  Her mood is better which makes all of us feel better even me who has been sick all weekend.  The moment we left the hospital on Friday afternoon I told Drew that I was wiped, little did I know how wiped I was.  I woke up Saturday morning with a fever, feeling achy all over, and feeling like I swallowed a golf ball.  I spent Saturday afternoon in urgent care where they diagnosed me with strep throat and sent me home with antibiotics.  After sleeping most of the weekend, drinking plenty of fluids, and three doses of antibiotics, I am feeling much better.  The moment I announced that I was feeling better tonight everyone in our house cheered, especially my husband.   He deserves a medal of honor for all of his energy and efforts given to our children and house this past week! 

Tomorrow is another big day, I have a weeks worth of household responsibilities to catch up on and an appointment with Lucy’s neurologist.  We are going to discuss how we are going to start Lucy on the mito cocktail.  I also need to make a call to Lucy’s GI doctor to get some advice on how to control the granulation tissue that is growing back around her tube.  From what we understand granulation tissue is the body’s natural response to a foreign object in the human body.  I am hoping that we can figure something out so that we don’t have to reapply silver nitrate to control the tissue.

We are going to try to catch our breath and enjoy the last few weeks of summer vacation before school starts again.  The weather here is extremely hot so anything we do is going to have to involve staying cool.  I predict that we will eat our fair share of ice cream and popsicles in the next few days, which will certainly make Jack, Megan, and Sophie very happy.  Drew was planning on taking some vacation time this week but after last weeks unexpected turn of events we are going to have to reevaluate our vacation time.  Drew works for an incredibly generous company who have said to him time and time again to take what ever time you need.  He has been able to do this but at the same time he needs to get done the same amount of work. We will hopefully be able take one day this week  to make some memories and go on adventure with the entire family.  

Home Sweet Home

I am happy to be typing to you from the comforts of my own bed!  We are so happy to be home!   All of our children are nestled sung in there beds(well except for Sophie who has popped out of bed at least a half dozen times tonight) and I too am going to do the same just as soon as I tuck Sophie in bed again.   Good night, sleep tight! 

We’re still here but…

Here, meaning in the hospital but hopefully not for much longer.  We are still here because Lucy’s first culture grew positive for staph aureus, aka MRSA , in addition to the strep A bacteria.  We are waiting to get the results back from her second culture to see if that too grows the same staph bacteria.  Hopefully, tomorrow we will find out those results.  We had to switch Lucy’s antibiotic tonight to a medicine that will fight the two kinds of bacteria.  They were hoping to be able to administer a few more doses of IV antibiotics, but Lucy’s IV quite on us again and this time it was in less than 24 hours!  Thankfully we were all in agreement to switching  her to oral antibiotics instead of torturing her by placing another IV.  She is a very difficult stick , on top of that her veins are shot from her last admission at CHOP. 

We had her EEG done this morning which will hopefully come back normal.  If it doesn’t I wonder if acting like your head is going to be severed from you body just minutes before having the test preformed can have any effect on the results.  If so, than that could be a reason for the abnormality.  Oh my did she ever carry on and on and on… I can’t blame her one bit, she has been through way too much!

Now for the best part of this post, Lucy appears to be feeling better.  She is acting silly again and doing more smiling tonight than crying, hooray!  Her stoma looks better, not great, but better than it did even this morning.  It’s still oozing but not as much as it was even this afternoon.  These are all good signs that the medication is working.  If she continues doing this well, we should be discharged tomorrow and sent home on oral antibiotics!   I have packed our bags every morning this week in anticipation of going home, I think that’s a bad omen.  Instead, I will wait until I sign the discharge papers to pack us up.  Hopefully I will be able to update you from the comforts of our own home!  Thanks again for your continued support, your thoughts and prayers mean so much!

Aaahhh….choooo….

  

 

 

So funny!

What day of the week is it again?

You can really loose track of time when everything you need to do revolves around someone else's schedule.  This afternoon Lucy’s nap was not as long as I hoped it would be, who was I kidding, nobody sleeps when they are in the hospital.  We met with the infectious disease team this afternoon.  They took a look at her site and even commented on how “oozy” it looked.  They are concerned that the strep bacteria could stick to her current PEG tube, and despite giving her antibiotics the strep could return because it is on the tube.  Just when I was celebrating yesterdays victory we are again faced with the possibility that this tube may need to go.  I am going to take the wait and see approach with this one, the infectious disease folks are not so much the optimistic types.  I understand, being realistic just goes with their territory.  They were also leaning towards staying on IV antibiotics for 48 hours vs. 24  hours.  This means possibly having to stay another night, ughh.  Speaking of IVs, we had to place a second one tonight because when we administered the first does of antibiotics her IV quite on her, big surprise.  Right away Lucy made it know what had happened by screaming out in pain.  Apparently the medicine has a burning feeling when it touches the skin, and after the silver nitrate experience today lets just say she has had her fair share of burning sensations for one day.

We had a visit from our neurologist today.  She came up to see us and discuss briefly Dr. Shoffner’s report.  We were able to discuss some thoughts on what to do next.  She is going to look into getting Lucy started on the mito cocktail.  We discussed starting each medication individually to see how she responds, if all goes well than we will be able to compound all the meds into a “cocktail” of sorts.  She has seen great  improvement in some patients who have been on some of the supplements in the cocktail, specifically CoQ10 and carnitor.  She is also onboard with starting the Leucovorin for treatment of the cerebral folate deficiency. We will see her in clinic on Monday to discuss further what Lucy’s needs might be in the future.  As for her immediate future she has ordered a EEG of Lucy’s brain tomorrow to see if we can detect any changes from her last EEG in September.  Lucy appears to be having a type of seizure known as petit mal seizures, brief staring spells.  Drew and I think that she has been having these types of seizures her entire life but now that she is older they are becoming more obvious to us.  Dr. Shoffner commented to us that it is very difficult to detect these types of seizures on an EEG or even a 24 hour EEG ,but just because you can’t detect them does not mean they are not happening.  Our nero agrees with Dr. S but does feel that doing an EEG could still yield valuable information when you compare her two results.

Drew and the kids came and had dinner with us tonight and boy were they a sight for sore eyes!  I know they feel so much better seeing where Lucy and I are staying.  They are always full of questions when they come and when they leave.  They picked out balloons for Lucy in the gift shop as well as a stuffed doggie because they know that Lucy loves balloons (Sara,if you are reading this she signed the word bubble for balloon;) a doggies. 

Well that about sums up the rest of our day, time for me to go to sleep.  I’ll update again tomorrow.