Summer of Doctors

I’m breathing a huge sigh of relief as I begin this post.  I’ve been waiting all summer to be able to write up a summary of our work so far with specialists, therapists, and other evaluations.  So this post means our crazy busy summer is winding down, and we can trade in our jam-packed high-speed appointment book for just a “busy” appointment book, and have more quiet days at home with nowhere to go.

 

I’m going to format this post a little differently than normal, being as factual as possible and trying to remove the emotional aspects, just because there is so much information to consider and I could seriously go on for days about everything we have learned and been through this summer.  So please know, as you read this, that I’m not in shock or denial or emotionless about any of it.  I’m sure you know us well enough to fill in the blanks of sadness, joy, and growing ever closer to our Savior through this crazy journey.

 

Right away at some of her first check-ups after birth, Libby’s pediatrician in California suspected a major vision problem.  At just over a month old, she was evaluated by an ophthalmologic specialist, who diagnosed her with Optic Nerve Hypoplasia (ONH).  Dr. Bothun, our new eye specialist here in Minnesota, described ONH as one of the most “bang-your-head-against-the-wall” conditions he treats.  It’s so frustrating because she has perfect, mechanically sound eyes, but a severely limited number of optic nerves to connect with the brain and finish the job.  Because it is a condition of the nerve and not the eye itself, there is no surgical correction.  ONH can, and often does, improve during the first 2-3 years of life, but the degree of improvement varies.

 The specialist in California advised Gene and Dede that the condition is often accompanied by hormone deficiencies, midline brain defects, and developmental delays, so they were encouraged to have an MRI of the brain, consult with an endocrinologist, and keep a close eye on her developmental milestones.

Although she had just had a six-month checkup a few weeks before, we took her in about a week after we got home in June (7 months old) to meet her new pediatrician, Dr. Erin, and set up our action plan for specialty care.  And what a plan we got! She told us she knew it was a lot and we could slow down at any time we felt too overwhelmed.  But she said, “I’m a big fan of hitting the ground running when kids have special needs, and establishing every possible connection early on, so that if you ever need it in the future you already have your ‘in.’” That made sense to us… so we began to attack the list:

1.       Physical therapy to help with an obvious torticollis issue and keep her gross motor skills on track

2.       Occupational therapy to continue developing fine motor skills, which are a little weaker, likely due to her vision

3.       Consult with a craniofacial specialist to evaluate concerns with the large flat spot to the right side of the head

4.       Consult with an endocrinologist to test hormone levels and check for deficiencies commonly associated with ONH

5.       Consult with an ophthalmologist to confirm ONH diagnosis and establish a baseline of visual ability

6.       Get an MRI to take a look at brain development, and to understand if poor vision has also been caused by anything neurological

7.       Get started on the evaluation process for Special Ed services through the school district, available year-round for kids birth-age three

8.       Get in touch with a County Public Health Nurse to make sure we understand all the resources available to assist us and Elizabeth

#8 was easy.  Dr. Erin actually had a county nurse call us right away; I think it was the next day already.  We got an appointment with her quickly and got more information than we could possibly use on what kinds of programs are available in our county.  One of the cool programs we got enrolled in sends us surveys every couple of months of all sorts of developmental milestones.  Not that every child is expected to “pass” every point of every survey for their age, since all kids develop differently, but after several months of surveys have been turned in, they can help us (and the rest of Libby’s team) to recognize patterns and make recommendations.

#3 was the first specialist appointment we had in the Twin Cities.  Dr. Erin had been concerned not only about Libby’s head shape and how it might affect her brain development, but also that her soft spot was a lot more closed that she would have liked for Libby’s age, and she wanted a second opinion on that.  Dr. Wood was the craniofacial specialist.  He first addressed the soft spot and thought that she should be fine.  He agreed with Dr. Erin that her head shape was pretty drastically flattened from one side to the other, and he advised us to have her fitted for a custom cranial cap that gradually rounds and re-shapes the skull.  Tim and I chose to delay that decision for a while, because he told us that the head shape would not impact the development of her brain in any way, and we wanted to try a couple different approaches before resorting to the cap.

#1 and #2 started right away in early July.  The primary concern for physical therapy right away was getting Libby comfortable with turning and tilting her head both ways, and using both sides of her body more equally.  She had been heavily favoring her right side, so the left side of her neck was pretty weak.  That alone had been a pretty significant factor in the development of the flat spot, since she always turned her head to one side when laying on her back.  They also began working on strengthening her sitting position and working toward being more comfortable in the four-point position for crawling.  In occupational therapy, they started working a lot with grasping, reaching, following sound, and overlapping PT a bit with the sitting and crawl positions.  Libby has made a lot of fantastic progress this summer with weekly visits for both kinds of therapy.  At times I have thought it to be overkill, since so many kids pick these things up on their own in the same amount of time it has taken her, without the help of therapists.  But then I remember what Dr. Erin said, that children with special needs can NEVER have too many people on their team and helping them along.  It never ceases to amaze me how much of what God created us to do is INSTINCTIVE and she just does it without ever having visually observed it, like smiling and chewing and pushing up on all fours.  At the same time, she does need a little extra push in some areas, like crawling.  Although it’s “fun” for her to experiment with pushing up and her body tells her that’s what it wants to do, she’s still lacking the visual motivation to turn that skill into movement or understand the purpose of travel.  She cries and cries when she’s “placed” in four-point rather than going there on her own, or when we (or the therapists) try to encourage crawling steps.  Well, I would cry, too… she must be so confused as to why all of us think this crawling thing is so great, when she’s so much more comfortable and secure on her tummy or back or sitting on her cute little bum.

On a side note, between PT work on her neck muscles and the chiropractic appointments we got her into right away, her head rounded out BEAUTIFULLY on its own within three weeks of the specialist telling us to fit her for a cap.  So it turns out that was a good call on our part to delay that treatment.  PT and OT still continue, although our schedule is lessening and we’re down to once every 2 weeks, so we just have one “type” of therapy each week.

#7, the Special Ed Eval, was the next thing we got going on.  I had actually gotten the ball rolling on that a little bit in May before we left for California, off a tip from one of our church members.  Later on in July, after things had begun to slow down a LITTLE bit at home (but not much), we started the process of having her evaluated for approval to receive special education services through the school district.  She was evaluated by the overall birth-age 3 teacher, who specializes in developmental assistance, as well as the birth-graduation vision teacher.  After a couple rounds of paperwork and several observation/interview visits in our home, we just went over our IFSP (Individual Family Service Plan) with them yesterday for the next year.  We’ll be having weekly visits with the vision teacher, and twice a month with the development teacher.  And the best part is, everything will be here at home until she’s three years old.  Aaaaah, this mama loves that idea after the summer we have had.  Therapy at home in my jammies with coffee? Yes, please! They have some great goals mapped out for her for the next year, and will be giving us lots of valuable help and ideas as far as modifications for setting up the house, mobility training, and general parenting considerations for a blind child.

#4, Endocrine Evaluation, got going at the end of July, back in the Cities again.  It wasn’t too long of a visit, since it was just a meet-and-greet with Libby’s new endocrine doctor, a quick physical examination, and then a blood draw to run labs and do a thorough check of hormone levels.  Most of her levels looked pretty good, but her thyroid level was low.  They had us start her on a ½ pill of the lowest dose of a common thyroid medication, and asked us to come back for an additional test of her adrenal gland to help determine if the thyroid medication dosage could be increased.  The doctor also asked us to have the MRI ASAP because she wanted to get a good look at the brain to check for common issues associated with ONH, and also see if her pituitary gland is fully formed.

So #6, back to the Cities a few weeks later for the MRI and the additional adrenal/thyroid test.  That was probably the most awful day we have had because it was so long and emotional.  She had to be sedated for the MRI, because the scan would take 45 minutes to an hour.  So we started the day by comforting our screaming, terrified baby as the nurses tried one, two, THREE times before getting a successful IV running.  The poor thing was so scared by the third time.  They finally got one strong enough to administer the sedation, but it would not be strong enough for the hormone test later on the on the day, so while she was under they did ANOTHER one; all in all that sweet baby got FIVE IV pokes that day and she still has a couple bruises almost three weeks later :(

The scan took about 45 minutes and then it took her about that long to wake up afterwards.  We got to feed her but we had to keep the two IV’s in so they could be used for the next test.  When she was awake and fed, we went upstairs to our own private room since the test would take a little over an hour.  What they had to do was give her the increased dosage of the medication through the IV, and then do five blood draws fifteen minutes apart to observe her cortisol levels and their reaction to the new dosage.  So in between blood draws we got to hold her and play with her, but those stupid needles had to stay in, and every fifteen minutes the nurse would come back and draw again.  We were SO glad when that day was over.



Daddy and Libby discuss the upcoming Packer season in between blood draws

The MRI did give us some new information about her brain that will be really useful to us as we move through the next few years and into her school years.  There are four areas of Libby’s brain that are either underdeveloped or completely missing.  As a result, we’re now on the lookout for specific delays, balance and coordination issues, possible learning disabilities, and we’ll have to keep a really close relationship with the endocrinologist because of some definite serious hormone issues, aside from the thyroid.  Again, all of these are things we’re on the “lookout” for, nothing that we KNOW she has or will ever have, just that she’s at risk.  So we pray, pray, and pray some more for our sweet, smiley girl who continues to grow and amaze us every day.  Since learning more about the specific parts of her brain that haven’t developed correctly, I’m so amazed at God’s creation that these teeny, tiny parts control SO MUCH, and at the same time that God has designed such an incredible system of checks and balances that when entire portions of the brain are MISSING, a child can continue to grow and develop at a seemingly normal rate.  Amazing.

If you’d like additional info on the specifics of the MRI, you can message me on facebook. We got a pretty short “report” from the doctor, so I did a little research and typed out an “extended version” (I’m sure you can imagine) for our immediate family, with my own commentary to keep things light :) I’d be happy to share if you’re interested.

So finally, to wrap up the endless summer of appointments, we completed #5, Ophthalmology Eval, this past Monday. It really was a nice, drama-free visit after the MRI we had just gotten :) They did a thorough eye exam with all kinds of lights and lenses, and agreed with the diagnosis of ONH that was originally given in December.  Dr. Bothun, who will be her eye doctor, only needs to see her annually for the time being, so that he can observe progress in her eyesight now that he has a baseline established in her chart.  He stated what we already knew, that her vision is extremely impaired with occasional, but inconsistent, reaction to bright lights.  He, too, stated that there can be improvement to the vision in early childhood, but starting with the level of impairment that she is, it likely won’t be much at all.  We can certainly continue to pray that God use Elizabeth to defy the odds and stump her doctors, but we also need to prepare ourselves for the strong possibility that she will never see.  Either way, God will use her as a beautiful, talented, amazing blessing for our family, His church, and everyone who knows her.

So! There you have it.  I know it’s a lot of information at once and I applaud anyone who actually made it through this whole thing in one sitting.  Even though the summer has totally flown by, we have had a full three months to establish all these contacts and process all this information.  We’re SO excited to be on a schedule now that is just the special ed teachers once a week, therapy once a week, and pediatrician/specialists occasionally and as needed.  What a relief! Maybe now I can finally clean my house like I’ve been wanting to ALL summer… well, I guess I better with weekly visits from the vision teacher here at home!

Again, please message me with any further questions you’d like to ask, either on facebook or e-mail me at megan.redfield.mr@gmail.com  I’m happy to share further details, but I wanted to keep it as short as possible (BAHAHAHA) for today.

To God be the glory, great things He has done!