I haven't written an update in a while! Things have been super busy! Here's what's been going on with Madison & us lately...
Madison has been doing really good! She's going to developmental Pre-K four days a week for about 3 hours a day. She loves school! She always is happy when we take her & she seems to really enjoy going. Apparently the kids like her too which makes me very happy. I was really worried about her having friends & engaging with the other kids because this time last year she wasn't interested in playing with or being around other kids her age.
Speech: Madison is definitely talking more & is trying to imitate everything we say. She's still pretty far behind for her age, but she's definitely improving! She really loves talking on the phone. She will get the phone, say hi, and then just start jabbering away! She's going to private speech therapy 2 times a week and is also getting speech through the school system.
PT: Madison has been going to a new PT for about 9 months now, and she she made big improvements! She's still wearing AFOs (braces), and I think they have made a big difference in her stability. Without them on she still is toe-walking some, but she isn't walking quite as unsteadily as she was. She is also almost jumping off the ground. Every now & then she will get it! She is doing great on the stairs! She is able to go up & down the stairs one foot at a time while holding on to the rail without assistance! She also really likes walking on the treadmill & counting to 30 while she walks :)
OT: Madison also has been going to a new OT for about 9 months too and she always is excited to see Mrs. Amy. She still has some weakness, but is also improving! She even stacked 7 blocks by herself at school last week! She knows and can name most colors and shapes, and is making progress drawing lines and stringing beads!
Cardiology: Madison had her PDA repaired last October, and we went back for a follow-up in January. Everything looks great and she was released from cardiology! One doctor down!
ENT: They haven't been able to see Madi's second set of ear tubes when her ears have been checked, so they likely are out. She doesn't seem to be having issues though hearing or with infections so it's not a big deal right now. She will likely have another sleep study this summer to see if her apnea has improved, stayed the same, or gotten worse. Her sleep study last year was much improved from her first one, but she still did have some apnea.
Neurology: Madison has been seizure free since 10/31/13, so her neurologist wants to try weaning her off her seizure medicine to see what happens. We started decreasing it last week, and so far no issues. Next Wednesday we will call him back with a report, and if she has no issues will reduce her dose again. We will keep doing this until she is off her medicine if she has no seizures or issues! She will have a repeat MRI next summer (2017) to check on her cortical dysphasia and Chiari malformation.
Urology: Madi had to have a nuclear cystogram today to check to see if she still has kidney reflux. Her last test for this a year and a half ago, the reflux had gotten worse. The test today was horrible & it was about an hour long. Madison had to lay on a narrow table & they had to strap her down from her chest to her ankles so she wouldn't fall off or get hurt. She also had to be catheterized, so that was no fun. How do you explain to a 3 year old what is happening? Very very hard to do. She cried the whole hour the test went on, but we got good news out of it & she won't have to do it again! The test showed no signs of reflux!! So this means she won't have to have surgery to correct it & she was released from urology! Another doctor down! She also has been taking a daily antibiotic most of her life to help prevent an infection since she only has one kidney & infections can cause scarring and damage. She also is able to stop taking that!
Nephrology: (Kidney Doctor) Madison goes back to her kidney Doctor in July for a checkup. She will likely continue to see this doctor since she does just have one kidney. She will have to have her blood pressure, urine & creatinine levels checked each year.
Insurance / Disabiloty: I'll just say... Nightmare. We applied again for Madi to get SSI disability and were denied based on income. Filed and appeal & haven't heard back yet. I was working with Diane Black's office to see what we could do & today was told that unless something changes with our income we will keep being denied. It's just so frustrating that even if we have to pay over $20,000 this year out of pocket in therapies, etc. it doesn't matter. It's very difficult to get additional resources to help get Madi the therapy she needs without using the majority of savings, etc. but we will do whatever we can to give her what she needs. And I'm not worried or stressed out about it... Things will work out & God has provided this far. I know that He will continue to.
Madi is still doing cheer & loving it! It's so exciting to see her doing something that she enjoys so much, and it has been really good for her!
Jake & I are just working & running Madi around :)
Life is hectic & busy, but it is so good! God continues to be so good & we are very blessed!
