Waiting for Shoes

It has been too long since we've updated you all on how our darling girl has been doing. When I really think about what has been keeping us from posting, it seems to me that we have been waiting for more shoes – not just the ‘other’ shoe (we’ve learned there is an endless supply) to drop.

Over the last nineteen months, we’ve faced so much and stretched our lives into Gumby shapes so often, that a short period of what you might consider normal is actually kind of…freaky. Don’t get me wrong though – we are definitely willing and hoping to get used to it.

So, here is a rundown of the things that have been keeping us busy but not crazy lately…

·         Lillie is getting tall. Our former preemie princess is catching up on her growth charts nicely and seems to have gotten her long legs from her mom. She is still working on her physical development, so she doesn’t walk yet, but when we help her stand we are all amazed at how big she is getting.

·         Her vision is improving. We just had an appointment with the ophthalmologist a few days ago and he is very happy with the progress she is making with tracking and seeing overall. At this point, he believes she is near-sighted and will need glasses someday but her optic disc hypoplasia will not cause her to have profound vision loss. The way he explained it is that the information should get from her eyes to her brain, so it will depend on how she develops neurologically to determine how much she can recognize visually in the long term.

·         She’s eating and drinking more. After her last hospitalization, Lillie started taking a new medicine to help prevent vomiting episodes and it also causes increased appetite in many kids. We are pretty sure Lillie is one of them. While her main source of nutrition is still a toddler formula through her g-tube, she is now eating 3-4 ounces of purees every day. And she loves drinking water so much we have a hard time pacing it so she doesn’t take more than she can handle.

·         We love her new clinic. We were truly blessed to have a wonderful pediatrician on team Lillie for her first year and a half, but it has also been wonderful to be a part of the new pediatric clinic that is designed to care for kids with complex medical issues like Lillie. She has been sick a few times in the last couple of months, and they are always available to work through it with us over the phone so we don’t have to bring her into the office or even the hospital in the middle of a vomiting episode, for example. It makes a big difference.

·         Lillie likes to kiss! Best of all, one night recently Lillie decided to kiss her daddy back when he was busy lavishing her with attention. Now she is turning into a pro – when she’s in the mood, of course. It’s hard to overstate how important this simple act of reciprocating affection is when you don’t know if your baby girl will ever be able to say “I love you” back.

 

Including a picture here so you can all see how great she is doing and how big she is getting. Our special princess makes us very happy.

 

 

 

Every Cloud Has A Silver Lining

Been a while, huh?  Let us explain.

On August 19 we had to bring Lillie into Dell Children’s Hospital.  While she had been having issues for the past few months with vomiting, giving her Zofran was able to stop the episodes.  We would then put her on fluids and work her back to her normal feedings over a couple of days.  But the weekend of the 19^th, the meds didn’t work. After trying to control the illness for a couple of days, we realized we had to take Lillie in.

Long story (and stay – 8 days) short, Lillie was diagnosed with gastritis.  She had bleeding in her stomach from open sores that were either caused by or were causing the vomiting.  By the time she got home, she was so tired of the hospital, she lit up and we got the first real smile we had seen for over a week.

One thing we learned from our stay – get a plan from your doctor.  You know we love the people at Dell; they have always treated us with respect and gone above and beyond when taking care of Lillie and us.  However, we feel the stay could have been a little shorter if we had demanded the doctors give us a plan sooner.  As a parent, it’s tough to remember that when your child is in pain and there are more questions than answers available.

Ultimately, it took a more experienced doctor to push the younger doctors into making a detailed plan that explained what had to happen to get us home.   We got that plan on Friday and we were discharged on Saturday.

On a lighter note, there was something very good that came from our hospital stay.  We got Lillie into a study at Dell that should help us with the organization of Lillie’s appointments and visits.  It will also centralize all of her medical information so we are not the only ones that understand the full picture of her health and development.

On Friday, we spoke with a doctor involved with the study – who has a daughter with special needs herself.  She explained they were trying to change the way pediatricians handle children with complex health issues.  In order to qualify, your child needs to have multiple health issues requiring multiple specialists.

There is a control group that continues to see their current pediatrician.  They get a phone call once per year where they are asked a series of questions about the health of their child and the quality of the care received from their doctor.  That is compared to the other group that changes their pediatrician to one at the Children’s Comprehensive Care Clinic at Dell.  That group goes to the clinic for care and answers the same questions once per year.

After hearing about the study, we signed up.  We expected to wait a few days to find out what group Lillie would be in.  We got the answer the following day.  Lillie randomized into the clinic group.  We were very excited, just a bit sad we would have to leave our current pediatrician.  She has been great to us and we really are sad to leave.

Over the last week or so, Lillie seems to be doing much better and is weaning off the stomach medication she needed to heal the inside of her stomach.  She’s getting back to a more normal routine and we are getting her smile and laughs back, again.  We started with a new Speech Therapist this past week and are excited to get going on all her therapies.

We look forward to going to the new clinic and we’ll let you know what we think.  We’ll try not to be so long away next time, too.