Raise your hand if you are tired of hearing (or reading) my complaints about our trip...
Well, since it is hard to type with my hand raised, I will just move on. Let's talk about something else shall we? How about an update on Emily?
On Wednesday, we had an appointment with the neurologist. We have seen the same doctor since Emily was in the NICU, but that doctor decided to leave the practice. We were not thrilled about that, but what can you do? This time we met with a nurse practitioner who was nice and very thorough, but next time we will make an appointment with another doc in the practice. We asked about some movements that Emily has been doing lately. We wondered if Emily might be having seizures and had outgrown her seizure medication. We showed her the movements and she assured us that it is just Emily's startle reflex. She also said that her seizure medication is at the right dosage for her size, but if we saw any seizure activity that we should call and they would increase it for us.
Something that Mike and I have talked about for the past month or so is Emily's other medication, Baclofen. This medicine is supposed to relax her muscles, but the trick is - it relaxes all the muscles in her body even the ones that don't really need it. So we wondered if she would have better head control and trunk strength if she stopped taking this medication. Our physical therapist didn't really have an opinion either way, but suggested that now might be the best time to take her off since she has so much extra therapy. We checked with Emily's orthopedic doc over the phone and she was not thrilled with the idea. The neurologist felt the same way. Her concern is that Emily will end up with muscle contractures (a permanent shortening of a muscle or tendon in response to continued hypertonic stress exerted on that muscle or tendon, such as constant spasiticy). Since we do not want that to happen, she will stay on the Baclofen for now. We were glad to have our questions answered.
On Thursday, Emily had a busy day. In the morning, she met with the nutritionist. Our little weed, has not slowed down in her growth (my back can attest to that!). Here are the latest stats:
Height - 34 3/8 in.
Weight - 26 lbs. 11 oz.
She continues to do well with her feeding and growing so nothing will change on that front.
In the afternoon, Emily had OT and PT. Well, really by the time PT came, she was crying and whining and didn't want to be bothered. So PT didn't really get to do much with her before Mike put Emily to bed for a little while. So instead we focused on equipment. In February, I believe, we ordered a Leckey Easy Seat for Emily through First Steps. It came in at some point, but it was too small, so we had to order the next size up. The second one finally arrived this week, but it was missing two pieces that Emily really needs. Plus we realized that the chair did not have the proper positioning that Emily needs. So after 6 months of waiting - we are back to square one.
That's OK. We decided to order her another chair. The Leckey Advance Seat is a lot more versatile and gives Emily more of the support and positioning that she needs. This one will be ordered through our insurance and will be ours to keep. In related news, we also had Emily measured for a wheelchair. Her stroller just isn't cutting it anymore. She tends to slump over in it and, truth be told, she is getting too long for it! I think it will be great to get her something that will give her the support she needs, so she can sit up straight and take everything in. For now, we are really excited about the chair, but I know when it comes in I will have my share of emotions about that. Guess I will cross that bridge when I come to it. For now, I am thankful that she will be getting what she needs.
Well, I believe that about sums it up for Emily. The week has been hectic and I think she has completely forgotten what her normal routine is, but hopefully things will quiet down in the next week.
I have not forgotten about the pictures from our trip. I really haven't even looked at them yet. Once I do, I will post a whole bunch. We have some that really show off Emily's pearly whites and I know you won't want to miss that!