I already posted about the cardiologist appointment she had on November 23rd, but to recap Magnolia has an ASD, PDA and pulmonary stenosis. We will recheck all of those late in January.
Magnolia had her follow-up kidney ultrasound on December 1st. Her kidneys are getting bigger, but are still extremely small (but so is she). The left kidney still has fluid on the pelvis but less than before. We will recheck those in a couple months. Until then we will just watch for any signs of kidney failure.
We had a hip sono on December 6th. Magnolia has hip dysplasia, much worse in her right hip than her left. We went to see an orthopedic doctor on December 14th. He did not feel a hip click with Magnolia and said the ball is not completely out of the socket. He seemed to think that her hip socket is just not curved at the top which means her femur rides higher than it should. At this time they said she is too little for a brace so we are waiting until February to see if there is any improvement or if at that time she can fit into the littlest of braces.
On December 8th, we took Magnolia for her first vaccine. Because of her seizure risk we are taking vaccines slow. We decided that at this point our biggest concern was whooping cough so Magnolia got her DPT shot. She didn't have any reactions which was great news. We watched her very closely!!
|Her legs are so skinny that shot must have hurt! OUCH!|
On December 21st, we went to the Speciality Clinic to see a group of doctors. This was something very new to me but I was pleased with it. A huge group of specialist have clinics once a month that you can attend. Obviously they don't have a Wolf-Hirschhorn Syndrome clinic but they allowed us to attend the Spinal Clinic. We got to see an orthopedist, neurologist, nurse, nutritionist and a physical therapist. I loved it for several reasons, mostly because it was one 2 hour appointment rather than tons of 30 min ones. I loved that I only had to get Magnolia out in the winter and exposed to all the clinic germs once to see all those doctors rather than go to each one individually at their own clinics. Her neurologist was very pleased that we aren't seeing any seizure activity at this time. He also said at this time she didn't appear to have a tethered spinal cord. He noticed a sacral dimple in the hospital and said he wanted to monitor it. The nutritionist was happy with Magnolia's growth and eating. She is taking about 40 ml by bottle every 4 hours during the day which comes out to around 160 ml. She then has a continuous feed through her g-tube at night. She takes 20ml an hour which is 160 at night. There are many occasions both day and night which Magnolia is hungry and eats over that. The physical therapist worked with Magnolia and showed us ways to work with her as well as ways to hold her to get her right side to loosen up. Magnolia LOVES her right ear pressed against her right shoulder. Her neck muscles are tight, but not so much she can't move the other way, she just really likes it that way. We are constantly moving her around trying to make sure she doesn't tighten up. The PT also noticed how Magnolia pulls up her right leg and hip almost forming a C. We really need to work with her and keep her from doing this. The orthopedist was pleased with how well her foot looked. Magnolia has what they call a calcaneal valgus right foot. We work with it everyday and it shows! It looks so much better and it has a great range of motion. The ortho was surprised with how great it is looking. She said we might have to cast at some point but right now just keep doing what we are doing.
On December 27th, we met with the audiologist. In the NICU Magnolia passed the BAER test with her right ear and only failed with her left. She still is not passing with her left ear. The audiologist said Magnolia has loss in the lower tones in both ears but much more significant in her left. She is going to recheck in 3 months to see if there is any improvement. Magnolia did fairly well during the test but was awake and got annoyed with the thing in her ear so they are hoping her loss is not as profound as the test shows. They did say if you are going to have any hearing loss the loss in the low tones is the kind you want.
The last of the initial follow-ups was to check Magnolia's eyes. We went to see a Pediatric Ophthalmologist on December 28th. Magnolia's eyes are continuously red and they water all day long. She also doesn't close her eyes all the way when she sleeps and one eye lid is slightly contoured so it rarely shuts. Her eyes also are full of gunk and are often matted shut in the morning. All of that we found out is no big deal and very typical of infant eyes. We are to massage the tear duct (which we had already been doing) and wait to see if it unblocks. He said if it's still blocked at one year of age we will discuss surgery, until then just massage. He said her eyes are not dry, which we wondered about because of how they are open all the time. He gave us some medicine for the gunk. He dilated her eyes and said that she is delayed with tracking (we knew this), but at this time he doesn't know if it's the syndrome or something wrong with her eyes. He said Magnolia's eyes look structurally great so he thinks she is just delayed, but wants to check her again in 6 weeks.
We are getting weekly visits to work on PT, OT and speech. Of course we do all of the exercises everyday, but the therapist comes to the house once a week. We really like her and it is great to have 'fresh eyes' see Magnolia. She confirms things I think I'm seeing at home and gives us fun things to work on. I have always admired and had a huge respect for therapists but it is even more so now. She will show me something and I will think, "I can't believe I didn't think to do that! What a great idea!" We are very lucky to have someone wonderful to work with.
Recheck is apparently the new catch phrase. We are pleased and relieved that for the most part the doctors aren't finding new problems and aren't saying she has to have surgery or something else very invasive right now. We are just waiting for the time being. However, we don't want to just wait around forever. I'm hoping we will know when it is time to start talking about doing something about some of these issues. Or better yet hopefully the issues start resolving themselves!! But right now waiting sounds great. After all she is only 12 weeks old and only 6 lbs 1ounce.
|Pretty in pink|
|Loving her new playmat from Santa|