Monday, December 10, 2012

Hope is FOUR!!

Hard to believe it, but Hope turned FOUR last Friday!!  Hope is having a really great time being a big sister to Lydia.  They like to snuggle together, and Hope is getting used to someone else being around.  Hope is still going to pre-school two days a week and she thinks it is the best thing.  Ever.  She has really great teachers and she has lots of little friends in class.  They are all very excited to see each other when they get to school.

On her birthday, Hope got to go out to dinner, a buffet dinner, where she could try lots of different foods.  She tried apple sauce, jello, banana pudding, mashed potatoes, ice cream and cream cheese frosting (off the top of a red velvet cupcake).  She also tried cotton candy, and she REALLY liked that.

Hope loves being a big sister.  Mainly because she has a new cuddle buddy.

On her birthday, Hope got to try a lot of new foods.  Cotton Candy was a fast favorite!

One of Hope's cute birthday presents.  Of course it has ladybugs on it

Hope is a giggly girl and she loves to laugh!

Before this picture was taken Lydia was trying to eat Hope's cheek.  Shortly after this picture was taken, Hope decided she wanted to take a bite out of Lydia's head.  Clearly they are best friends.

Thursday, November 15, 2012

Hope is a big sister

Hope is really proud to announce that she is a big sister!!

Lydia Dawn was born Tuesday, November 13 weighing in at 7 pounds 4 ounces. She is healthy and beautiful. Mom is doing well and everyone is set to be discharged home today.

Hope is very excited to be a big sister and to have a snuggle buddy.

Wednesday, October 10, 2012

Big Things for Hope

Hope has had lots of exciting things happening in her life. The first big announcement is that Hope is going to be a BIG sister!! Hope is looking forward to meeting her little sister in November. Everything has gone really well so far. Hope is also looking forward to being able to sit on her mom's lap again!

In September, Hope started school. She goes to pre-school at the Primary Center two mornings a week. Hope LOVES going to school. Really. She is all smiles. It has been really nice for Hope to meet some friends her own age. Hope has friends at school and her teachers are great!

Hope had a busy summer. She loves to be outside and, apparently, has become a big fan of camping. Hope was able to go with her mom and dad, and Grandma & Grandpa R, on a long camping trip to the U.P. in July. She also went camping at PJ Hoffmaster State Park in June and had a great time there too.

Hope was especially excited that she got to see her Grandma & Grandpa H two times recently. Along with her Aunt Kim and her cousins from North Carolina for a few days. It was a lot of fun!

Hope always has something exciting going on but that's all for now. Just thought we'd share a little bit of Hope's life this fall. She is growing all the time but still the cutest little Hope in the world.

Thursday, March 15, 2012

Long overdue update

In some ways, the fact that this blog doesn't get updated very often is a very good thing. It was started initially during the days when we weren't sure if Hope would be with us the next day. That was a time of sometimes hourly tests and procedures and life-threatening surgeries and illnesses. We counted the time by the hours not days. We counted her weight by grams not pounds. We fed her only a few milliliters not ounces. It is so good to be in a much calmer place than those days. I know I am certainly thankful for it.

That being said, it has been a long time since the last update. Truthfully, not a lot of big things have happened since then.

We met with her ENT to discuss the options for getting the trach out. Basically, all of them involve surgery. The options include (in no particular order):

1. Using absorbable plates to "stabilize" her trachea. These plates are normally used in kids with facial bone fractures. The plates would be absorbed (much like absorbable stitches are) with the hopes that scar tissue would form around them permanently strengthening her trachea.
2. Using cartilage from Hope's ribs to "stabilize" her trachea. This is a procedure that is often done but is rather invasive. There would be the incision to her airway and also an incision to her abdomen to retrieve the cartilage.
3. Some combination of 1 & 2 - using both absorbable plates and rib cartilage.
4. Removing the "floppy" portion of her airway and reattaching the ends (from where the floppy portion was removed) together.
5. Leaving the trach in. At this point we assume that Hope has outgrown all the floppiness that she can outgrow and this floppiness comes from actually having the trach so it is unlikely that time would solve this issue.

We have preferences among this list but our biggest issue comes from the fact that her doctor/surgeon has never actually done these procedures. He's used the processes in other surgeries (facial surgeries) but never on an airway. Our plan as of right now is to get a second opinion from Cincinnati Children's Hospital as they appear to be "THE" hospital to go to when it comes to airway reconstruction.

Recently, Hope has also been seen by an orthotist and now has some AFO wraps (braces) for her legs/ankles. As you can tell, she loves them..... ok, not really.

At least she was able to get them in pink with pretty butterflies on them. She doesn't have to wear them all of the time, which is good because at this point her tolerance of them is about 6 minutes. After that if she isn't good and distracted she has a major meltdown. The reason for her wearing these (and the reason she hates them) is because of her Cerebral Palsy she has a tendency to point her toes and keep them pointed. At this point she has great range of motion but if she were to keep her toes pointed all of the time the muscles and tendons in the back of her leg could shorten and that would make it extremely difficult for her to NOT point her toes.
After we picked up the braces from the doctor we headed straight to the shoe store and got Hope some spiffy new shoes that fit over her braces. In my opinion with the shoes on you can't really even tell that she is wearing the braces. She wholeheartedly disagrees with me. She can tell perfectly well :)
On a happier note for Hope, the beautiful warm weather (it was almost 80 here yesterday!) means that she gets to go outside and play more. Yesterday we put her tree swing back up and she played in her swing until she fell asleep. All that sun and fresh air wear a kid out. She is napping right now but I think the plan is to go for a wagon ride once she wakes up! :)

Friday, January 13, 2012

Not Ready Yet

Well, this week hasn't gone exactly according to plan. Late last month Hope's trip to Ann Arbor to get her trach out was rescheduled from January 12th to January 9th so bright (well actually really dark) and early on Monday morning we (Hope, Grandma Robinson and Mommy) packed up the car and headed to Ann Arbor. Hope was scheduled to check-in to pre-op at 9am. They took her back into pre-op around 9:45 and then back to the operating room around 10:15. By 11:15 she was in recovery and we met with her ENT dr. He said that he removed a piece of scar tissue from her airway and after he did that her airway looked perfect. He was ready to proceed as planned - cap her trach overnight, observe her and if she did well then on Tuesday morning we would pull her trach out.

A few minutes later we were able to join Hope in the recovery room. She was pretty groggy and was slowly coming out of the anesthesia. The recovery room nurses worked on getting her ready to go to her room in the ICU, but when they called up to the ICU they said they didn't have a room available at the time. They weren't sure when they would have one. Since it was likely going to be a while the nurses got a dvd player and some movies for Hope to watch.

Hope watching a dvd

Since the bronch looked so good the next step was to cap her trach. After a couple of hours of waiting in the recovery area her doctor came by and decided to cap her trach before we got to a room (since it was taking so long). It didn't go well. Once they capped the trach Hope started struggling to breath. She has had her capped for many months at home now and her doctor thought she might have been struggling because her airway was swollen and irritated from the bronch. They took her trach out and looked at her airway with a scope to see if a clot had formed from taking the scar tissue out but the airway looked good. They decided to give her some time and try the capping again later.

Well, 10 hours after arriving in recovery, yes, 10 HOURS - we finally had a room for Hope. Because she was being observed in the ICU we were not allowed to be with her while they settled her in the room, we had to wait in the waiting room. About 10 minutes later we were allowed to go into her room and when we arrived her nurse told us they had tried to cap her and that "she had failed". We were livid! We were not told they were going to try to cap her at that point, we were not allowed to be present and the nurse and respiratory therapist who did the capping did not know about any of Hope's issues (she struggles sometimes with the capping if her head is not positioned well). After getting very irate with the nurse the doctor was called and we tried capping again. This time Hope did well with it and continued to do well the rest of the night.

In the morning we talked to the doctor and he was comfortable proceeding with the trach removal. A short while later several doctors surrounded Hope's bed and removed her trach (this is a non surgical procedure where the trach tube is simply unhooked and removed). Hope immediately began to struggle and panic so the trach was put back in. We believe that this was partly because Hope was not ready to have it out and partly because she felt frightened and agitated in the situation.

In any case, the doctor is not comfortable with the trach being out yet. He thinks that while her airway looks perfect perhaps the exterior structure of her trachea is weak. We are meeting with him on January 27th to discuss what the next step will be. He says that ultimately getting the trach out is still the plan. We will keep everyone posted.

Hope and Daddy