Spina Bifida Clinic...we have the Rarest Child!First and foremost I will say that today was the day we've been waiting for for 6 months. It's been such a long time coming, and I'm so glad the day finally came!! We left home about 7 am, and got to Oakland without much trouble at around 9 am. Grace was great and enjoyed the trip the whole way there. I drove first, and it was so fun pointing the cows out to her because when you make the noise, she mimics! MMMMMMMMMMM!!!!!! It's so cute! and when you do the sheep....AHAHAHAHAHAHAHA she also mimics that one! What an awesome morning! We met a cute little family on the way into the clinic that had a little down syndrome daughter that just turned two, so we chatted with them a bit and the girls jabbered at each other, so that was a nice way to distract both girls. Then we finally got called back.... drum roll!!
Well, it's not like I can tell you in one sentence how it went, but it's all good news. We met with 12 doctors, so I will do chunks and explain what each one of them said. But before we even met with any doctors she was weighed and measured for length, and those measurements are here: 20.7 pounds and 30" tall. So she's in the 9th percentile for her weight and the 25th percentile for her height, and the height was 10th percentile, so she's definitely been in a growth spurt! Alright, so here we go with the blocks of information from the doctors.
ORTHOPEDICS: Dr. Townsend- There is going to be no need for any orthopedics. Her feet flex in all ranges that they should, and she has ataxia, which is a balance issue, as though she were walking drunk. He made sure to let us know that we MUST know the word "ataxia" which I thought was funny! These doctors just want us to know all the technical terms, but that's good. Also, Grace has a slight curve of the spine to the left which will have to be watched for scoliosis (which is common in children with spina bifida). Remember, Grace does NOT have spina bifida, but many of her issues correlate with spina bifida, so she qualifies to be in this clinic. He watched her walk, crawl, pull to stand, reach and her overall movement.
PEDIATRIC NEUROSURGEON: Dr. Atefch Hosseini- Grace should have 10 words in her vocabulary by the age 18 months, and that's either in sign or language. So far Grace has: Wow, what, daddy, mommy, eat *sign*, more *sign*, all done *sign*, dog *sign*, blow kiss *sign*, point to nose when asked *sign*. So she's pretty on track with that! Kids with issues at the back of the head (hypoplasia cerebrum, which she has) have issues with feeding and swallowing, which is what we are seeing with Grace. But with time and patience, she will learn to swallow rather than allow the food to sit on her tongue to gag her. The hypoplasia of the cerebrum also could be causing her balance issues and walking issues, but as she gets sturdier on her feet, she will continue to strengthen and the balance won't be such an issue. but of course, we won't know that for sure. This is a guess because we won't know for sure. As she starts to mature and is older (4-5 yr) we will know how bad or good her walking will be. The hypoplastic corpus callosum, which is the bunch of membranes between the two hemispheres of the brain isn't a huge issue. Neither of these are a huge issue. She could say they look drastic and can tell there will be issues, but since the problems with the two spots are so small, we might just see a tiny bit of an issue, like a tiny balance issue. The corpus callosum just doesn't have as many nerves that are asymmetric. This doctor did notice that Grace legs are weaker than her arms, so hopefully as she continues to walk, that will balance out (they call that asymmetry). Her head circumference is 43 cm.
DIETICIAN: Andrea Curran- So the diarrhea from the whole milk she is pretty certain is not from allergy, but from Grace being lactose intolerant. So what we can do to take her off the Pediasure (as it's pretty expensive) is to switch her to Carnation Instant Breakfast (which these doctors call CIB) mixed with Full Fat Lactaid Milk. Then wean her into the whole cows milk SLOWLY, as in 1 ounce a day for 2 weeks. If the diarrhea comes back, then we are to stop, wait a few weeks and try again. If she fairs well, then we are to increase to two ounces once a day, for 2 weeks, and so on. She said Grace will most likely come out of the Lactose Intolerant, she just needs to have time for her body to slowly build up the enzymes to break down the lactaid in the milk. She also gave us some good ideas for high fat foods, as Grace is still needing the calories (full fat yogurt, sweet potatoes, anything with butter or olive oil, etc)
UROLOGIST: Dr. Krishnan- Everything up to now is sounding fine. From what we've said, Grace sounds as though she's voiding well for her urine. She has had semi-consistent wet diapers, things like that, and all the ultrasounds have come back normal, so all is good there. We discussed for a while if we are ever going to be able to get her potty trained, and that was a big "I can't be too sure". At 2 1/2 to 3 years old we will do a urodynamics test to see if everything in Grace's urinary tract is working. Here is an explanation of the test: This is a study that assesses how the bladder and urethra are performing their job of storing and releasing urine. They put a catheter in to fill the bladder and record the measurements. Then they take a post-void residual volume, which is where after a complete bladder, they measure the urine volume (what's left over). If there's a high level left, this means there is an overflow incontinence, which means they cannot stop their bladders from constantly dribbling, or it dribbles after they have passed urine. There is also a uroflowmetry, which measures how fast the patient can empty the bladder. There is also a multichannel cystometry which measure the pressure in the rectum and bladder using two catheters, to see if there's a presence of contraction of the bladder wall during bladder filling. They will also test the strength of her urethra, and see if her sphincter muscles (the muscles that clamp close, and then open to release the urine) are working. So, all these tests will tell us if Grace is able to control her bladder, which means she will be able to potty train. Now, if she has the constant dribble, there are some things they can do. There is a surgery they can do to try and fix the continence, and if that's the way we want to go, they would check her neurogenic bowel to see if they can do surgery to repair that in some way at the same time. The other way we can go is to teach her how to catheter herself, and that will be the way we have to go for the rest of her life. So we are REALLY hoping that she is having normal bladder use, holding her urine till she's full, and releasing and closing back up again.
SPEECH THERAPY: Dr. Casey- At 18 months, speech therapy will start. WOO WHOO! He really likes all the noises that Grace is making, and loves the pointing she always does. He gave us a lot of ideas on what to do to help with sign language help, such as having Grace sit on one of our laps, showing her the object, showing her the sign, and then the person with her on their lap moves her hands to do the sign. Continue that with new words, and after a few weeks we should back off and give her just little promptings, like nudging her arms. Also, we need to label an object at least 4 times. So, if she points at something (ball) then I would get it for her and say, "oh you want the ball?" "This is the ball, here you go, you can have the ball." "Grace, you are holding the ball" that way she understands that things have labels. Also, if we are asking her a question, "What is this Grace?" then you should label that thing (ball) 4 times before asking her a question, that way she can process what you are saying. "What is that Grace? That is a ball. Here is the ball. Mommy has the ball in her hand. And now you have the ball." He wants us to do something called Auditory Bombardment (which after explaining, I've already done) and that's talking all the time, describing things all the time, repeating ourselves over and over. And that Grace won't start putting two words together until she knows about 50+ words for sure in her vocabulary. So that's interesting to know.
OCCUPATIONAL THERAPIST: Heather- She and I discussed mainly eating, as that's been an issue. From what I described to her, she said Grace is presenting at the 12 month development level with eating (still learning to move food in her mouth, learning that her teeth are to grind the food, learning how to swallow without gagging herself. She has to learn to do something with the food on her tongue rather than let if fall back too far and gag herself.) She said to continue giving Grace all the food we have and that with the transition period to adult food, she's doing very well with what she's capable of eating. About the mouth stuffing, all she really said to that was to give her less food so she doesn't feel like she needs to overexert herself and stuff it all :) While she was working with the OT, Grace did a stand from half kneel which is awesome!!! She also checked Grace's pincer grasp, which I told her was fine, and she agreed. Also, Grace has had no issue with texture, sensory issues, so OT at this time wouldn't be necessary!! Oh yeah!
PHYSICAL THERAPIST: Rehab- The physical therapist agreed that Grace doesn't need a walker, and that she's doing so well with her movements that she will definitely learn to walk on her own! YES!! She also said to practice being on the feet ALL THE TIME! So cruising, walking with mommy and daddy, things like that. Also, we need to work on squatting some more with her because that will challenge her balance tons more and strengthen her gluts, quads and hamstrings. So in the beginning, have her stand at the couch, put something a bit out of reach towards the floor and she will squat a bit to get it, and over time move it down slowly and then continue until you can put it on the floor. She was also noticing Grace's right side dominance, and said not to worry too much unless she starts to drag the leg, or when she's crawling, she starts to drop her hip to the floor.
LEADING NEUROSURGEON (man that did Grace's spine surgery with Dr. Zavikian): Dr. Pang- He came in with his Physician assistant as well as the Radiologist, but these latter two didn't talk much!! Anyways, he let us know that Grace's spine issue is the rarest in the world! WOW!! I had no idea! And it wasn't actually an issue with the spine, but with the bit of membrane that was at the tail end of the spine. It should have dropped off while in utero, but since it didn't, it collected fat and cysts on it which is what tied down the spine. Also, he said that her Gene deletion is so rare that they don't even have a name for it! So he and I discussed milestones, and he was thoroughly surprised she is pulling to stand. He said she has perfect looking legs, and that her feet are looking great. Also that she most likely won't need braces or anything like that, which of course the next doctor said different, but whatever. We also discussed the eye issue, and that Brad and I are on different sides of the fence when it comes to wanting the surgery ( I want it he doesn't) and he said DO NOT wait. You wait and it could be too late. Oh, I was right! Anyways, he was really happy with Grace's progress, and loved watching her crawl! We told him about the right side dominancy and he didn't know what that could be from, but said to watch it and let him know if it gets worse.
REHABILITATION DOCTOR: Mandeck- Don't use a Johnny Jumper! That's the first thing he said. It throws off her balance and will teach her to walk with a bounce. He said she will probably need leg braces if her feet turn in or out, but that will be a wait and see. Also there might be special shoes she could need just for some extra support of her feet (like heel support, things like that). But for now, no walker, no braces! She's doing great! He thinks that all the therapy she's in is great, and wouldn't say she's lacking anywhere in therapy available.
SPINA BIFIDA DOCTOR: Duane Marble- He discussed with us a lot about Grace's bowel movements and her neurogenic bowel. This is all pretty...gross and technical, but the overlook is that Grace sounds like she has Patulus anus, which is where her muscle isn't strong enough to close the anus. So she's always voiding. So what we are going to do is another deep clean with extensive Miralax for 10 days until voids come out light colored, and then after that a daily dose of the Miralax. After this, we are to watch to see if the muscle contracts and closes, and if she's able to void regularly (1-2 times a day) If she continues having issues, we will most likely need to move to a daily enema, so she will be cleared and won't have the continuous dribble we have been having. Especially for school and as she gets older, if she's not able to potty train the bowel, she will need the daily enema so she won't leak at school. The neurogenic bowel will never leave us and never get fixed, so she will either always be on Miralax, always doing an enema, or we could even do surgery to set up a catheter tube to do a daily catheter. So we'll see. We also discussed the horrible diaper rash when she has these dribbles, and he said Ilex (spelling) is really good. Its a really thick cream you put on and then over it you put Vaseline, and after a void, you just wipe the Vaseline and reapply, but don't wipe the Ilex off. You will wait about three days, and the Ilex will dry and peel off. Underneath the Ilex, the skin is healing without the acidic void and continuous wiping, so that's really awesome. We also need to be on LATEX ALERT. She's got it written in her file that she's allergic to Latex just to be safe. Children with spina bifida and early exposure to latex usually end up forming an allergy, and since she had a surgery at 6 months old, she's at high risk. So when we go to the doctor, nurse, dentist or anywhere, no latex. No balloons, no rubber bands or wrist bracelets. Good to know.
So all in all, a really good day. Lots of information, lots of positive things, and I'm happy. There was also a social worker we saw that I forgot about, but she mainly said that we should maybe put Grace in a child care once a week for a few hours so she gets exposure to places with kids, and so I can get a break. Also, that I need to be sure to get out and not seclude myself, and that it's going to take time for me to be done grieving about having a special needs child, and that it just won't be done. Good to know for the hubby!
Now we are home and I'm TIRED. Grace did well, got a bit wiggly at the end and started hitting, but that's normal when she's overtired. We didn't even make it out the elevator after all was done before she was asleep. Then she slept all the way home, and is now just waking up an hour later! Shew, she was tired!! Now mommy is going to get some ice cream!
Amanda
