All those times I have wished for more time in a day, well…today is that day. It is officially 12:00AM and I just remembered that day light savings begins NOW! Don’t forget to set your clocks back. I’ll write more later, right now I am going to bed. Good night :)
Oh my! This morning things were a little different than our usual routine, each kiddo had an event at their school in which they could come dressed in some sort of costume. Jack’s school allows them to come dressed in their Halloween costume as long as they do not wear a mask, paint their face, bring a weapon, or have glitter. That sounded fairly reasonable to me. Jack dressed up as Harry Potter complete with robe, wand, and lighting bolt scare on his forehead, which by the way is technically not face paint it’s washable marker.
Megan’s school does not allow the children to come in costume, instead they could come dressed in some sort of “farm attire”. This prompted some creative thinking on my part and some rummaging through Jack’s old clothes bin to find a “farmerish” looking shirt, a far cry from the Cinderella costume she wanted to wear. Megan didn’t want to look too “boyish” so some braids where in order and a little face paint to make her look more like a scarecrow. That qualifies as farm attire, doesn’t it?
Sophie’s school put an even different spin on the NO Halloween costume rule and instead said they could come dressed as their favorite community helper. She and I had to have a little heart to heart this morning when she got upset over not being able to wear her Sleeping Beauty costume or her witch costume. How do you explain to a preschooler that princesses and witches are not really community helpers? We came up with a compromise and dressed her up as a firefighter, complete with overalls (all we had were denim ones) and a firefighter jacket. We could not find our firefighter hat, which if you saw our playroom you would know why.
I was impressed with how they all looked, and that I was able to pull it all off by the time they all walked out the door this morning. Even better they were all very excited to go school and participate in the days activities! As a mom of many children, I’d just like to say that it would have been a lot easier if they could have all gone to school dressed in their Halloween costumes. At least I would feel a little better about spending all that money on costumes that the kids only wear for one night. Halloween is so much fun for the kids, but can I just say a little stressful for the parents. The best part of Halloween as a parent is stealing some.…ok,a lot of candy from the kids trick or treat buckets.
A lot of laundry, went to music class, ran an errand, did homework with the kids, allowed Lucy to sleep all afternoon, cleaned the refrigerator, made dinner, and went to NO medical appointments! Yes, we had a pretty normal day which we were all grateful for!
Yesterday morning I took all of the kids to our pediatrician’s office to get their H1N1 vaccine, and apparently so did everyone else. The office was crowded, but I was reassured that those who were in the waiting room when we were there were not contagious. It feels like everyone I have spoken to in the last week has either been sick or knows someone who has been sick. We are hoping and praying that we can stay healthy; because as you know, but the kids don’t, we are planning a BIG surprise for the family in FOUR weeks!
Lucy’s hair has been a topic of several e-mails. It looks better, but is still full of glue. We have been using lots of hair conditioner and baby oil, but the glue is stuck to her scalp. She doesn’t seem bothered by it, it only bothers her when we try to remove it. As hard as it is for me to not pick at the glue or comb her hair, I am going to leave it alone. Hats are good, she looks cute in a hat :)
BEFORE
AFTER
My hair hurts just looking at her…
Does anyone have any suggestions for getting super glue out of hair?
What a crazy busy day, week, month we have had! Yesterday was one of those days where I there was no room for error in the schedule. I had just enough time to get from here to there without stopping or being delayed by even the smelliest dirty diaper.
The 24 hours of having Lucy’s head wired and wrapped in gauze all the while carrying around an few extra pound bag over my shoulder went by quickly, and was not as bad as I thought it was going to be. Of course having a jam packed schedule helped to pass the time. Lucy never really attempted to take the leads or the gauze off. The difficult part was placing the leads and then having them removed when the test was done. I scheduled a double therapy session for Lucy yesterday morning because we know that when she gets over stimulated these are times when she has her starring episodes. Lucy did have a few starring episodes during the time she was hooked up, we’ll just have to wait for the results to see what if anything was detected. We were told that the types of seizures that Lucy is experiencing are difficult to detect on an EEG. We are scheduled to see her neurologist next Thursday, we are hoping the results will be back by then.
Our pediatricians office called me yesterday morning to let me know that they just received their shipment of H1N1 vaccines and to bring Lucy in ASAP. There was a simultaneous “HOOAY” that could be heard from our house and in their office, I don’t think that I have ever been so excited to have my kids vaccinated. Lucy received her vaccine yesterday and the other three are scheduled for 9:30 Monday morning! H1N1 is spreading quickly throughout our community. Megan’s school nurse called me Tuesday to give me a update, she was calling out of concern for our Lucy. We feel so blessed to have so many that care about us, it is simply amazing!
In addition to the double therapy session, going to or pediatricians office, and having Lucy’s EEG, we also had an appointment with Lucy’s CHOP nutritionist yesterday, we love her and she loves our Lucy! This appointment was scheduled on Monday because her GI wanted to have Lucy brought in for a weight check and to discuss the issues we have been experiencing with her j-tube. The good news is that Lucy has not lost weight but the bad news is she still isn’t growing as fast as they would like her to be growing. You can’t have your cake and eat it too, and yes pun intended! We are faced with several options, fortifying the calorie content in the breast milk to bring it up to 30calories/ounce, using all formula that is 3o cal/oz, and increasing her feeding rate through her g-tube. We will do what we can, the rest is up to Lucy’s body.
We have been too busy with medical stuff that I haven’t blogged much about anything else in our life. I am afraid to write this, in November we are going to try and take a break from many of the appointments and enjoy our life, when I wrote about trying to do this in July and August well…you know what happened. We are planning a BIG trip over Thanksgiving! The kids think that we are going to Florida to visit family, what they don’t know and we aren’t going to tell them until we arrive is that we are also going to Disney World for a week of relaxation, fun, and memories! Shhh…it’s a secret!
Lucy had a long and exhausting day, which means that we all had a long and exhausting day! After carefully orchestrating who was going to be where and when today, Drew and Lucy and I met at DuPont for appointments with cardiology and neurology. Lucy’s neuro referred us to this specific cardiologist because she has experience with patients with mitochondrial disease. It was a relief to Drew and I to learn that she was knowledgeable about mitochondrial disease and how that translates to the heart. Lucy has not shown sings of any obvious cardiac issues; however, she does have a tendency to drop her pulse ox at night when her body temperature lowers, and she also tends to have higher than average blood pressure. The cardiologist explained to us that these issues are most likely related to her autonomic nervous system dysfunction and told us signs to look for that would indicate possible cardiac concern. After discussing Lucy’s medical history, blood pressure, pulse ox, performing an EKG, and finally an echocardiogram we are thrilled to report that Lucy’s heart is HEALTHY! We were told to come back in a year for another check up:)
After our appointment with cardiology we went upstairs to have the leads placed on Lucy’s head for her 24 hour ambulatory EEG. We should have had this done next week so that we could have dressed her up as a mummy for Halloween. It took four of us to get all 28 leads super glued onto Lucy’s head, and than wrap her head in gauze. This was not an easy thing to have done for Lucy nor Drew nor I. In spite of all of the tests and procedures that Lucy has had done in her short life, it does not get easier to watch your child go through procedure after procedure. Somehow you do manage to find ways of coping so that you can continue to do what you feel is in the best interest for your child. It is not easy, tonight I am exhausted from trying to find ways of coping! We are hopeful that this test will give us some information as to what is going on inside of Lucy’s head. Hope for a good nights sleep so that tomorrow we wake up ready for another busy day.
She is so stinking cute even with her head wrapped in gauze!
Yesterday we had an appointment at DuPont to pick up Lucy’s new adaptive stroller/pediatric wheelchair/adaptive seating system/Hot Wheels! For those of you who know me well or have seen our garage, know that I am a bit of a stroller aficionado. Like a fine craftsman, I have to have the right tool for the right job. Notice how I phrased this in terms that my husband can understand, it helps him to relate to my stroller obsession. I have strollers that seat one, strollers that seat two, strollers that stand one and sit another, a vintage pram, a stroller that can go from laying to sitting(I love this one), a stroller that can handle our infant car seat, a double jogging stroller, my favorite umbrella type stroller that unfortunately doesn’t lay totally flat, and a not so great umbrella stroller that we use for traveling on airplanes. Even with all of these, Lucy was in need of a more supportive seating system that will allow her to view the world with better posture and with more support. She fits in her new seat like Goldilocks! I have yet to get a picture of her in it, but here’s a glimpse of what it looks like with her out of it. For those of you who are reading this and are wondering, it is a Kimba from Otto Bock.
The frame on the left is a high-low base for our house. The seating system can attach to the stroller frame or the high low base. In case your wondering, it is heavy and slightly tricky to use, but we will be pros in no time.
Tomorrow we have an appointment with cardiology and neurology at DuPont. Please keep us in your thoughts and prayers as it will be a very long day.
