Friday, June 13, 2008

Appointment with Disappointment

Yesterday we had Joe's appointment with the developmental specialist. I hate how our expectations sometimes taint our perception of an event or experience. I don't know why but I was expecting him to be in a play therapy room being challenged to do things and people would be taking notes on his physical behavior, etc. Not what happened.
For one thing - I had called the day before to get an idea of how long it would take and I was told an hour. Wrong-o. We were there for three long hours.
There was no cute play therapy room like I thought there would be. We were taken to a weigh and measure room (I'm sure you can guess what they did there). Then to a normal cold, sterile doctor's exam room, where we waited for the doctor. There were a few toys (very dirty ones) on the table but they were never brought out. The doctor was very nice. But she proceeded to ask a series of questions (most of which we had already answered in the paperwork we filled out) about Joe's health and development and family history, etc. She barely even looked at him.
She didn't have anything to say that we didn't know already. She just gave new words to describe what we already knew: "globally delayed" meaning he's delayed in all areas equally.
She ordered a barrage of blood and urine tests to test for a myriad of disorders, diseases, and who knows what else. But she even said herself that we may or may not even find anything out from these tests that will cost thousands of dollars. She recommended that we cancel the appointment with the pediatric neurologist that I worked so hard to get and see some other doctor (a genetic neurologist) who will take much longer to get in to see.
We talked to a social worker about possible supplemental insurance to help with the impending doctor bills that will be coming as we continue to search for answers to Joe's delays in development. We talked to a nutritionist because they thought he was a little on the slender side. So they want us to add sugar to his food to give him extra calories. I don't see why adding pure sugar to a healthy baby's diet would help anything - even if he was underweight - which he's not. Anyone who has seen my boy can see that he's not malnourished. He's got more rolls than I do... well maybe. Then we went and had his blood drawn for the tests. Joe was such a trooper! He hardly cried at all while the nurse probed his little arm for a vein and filled vial after vial.
We followed up the draining visit to the hospital with a visit to our herbalist. That was a much more encouraging appointment. In alot of ways I am more confidant in natural remedies than in modern medicine. But at this point we feel we need to pursue as many avenues as we can to figure out what is going on with our Little Joe. Even though my feelings on the subject are often a roller coaster of highs and lows, ultimately I do have confidence that if we are patient and wait on the Lord's timing that we will continue to see improvement in Joe's development. Your continued prayers are much appreciated. Thank you.


My Thoughts Exactly said...

Thank you for these updates. I appreciate them and we will continue to pray for your sweet baby.

AlaneM said...

I'm so sorry you had such a bad visit. There's just nothing like having your expectations smashed to smitherenes.
I'll keep Joe in my prayers.

Julie said...

I am sorry that things were so disappointing yesterday. I am soooo glad that you are smart enough to know that adding sugar to his diet is worthless! There is so much that you could do to his diet that would actually add nutrition too, like good fats! I am appalled to hear that this is what a nutritionist is saying. Pray and ask for wisdom to know the right things to do and God will lead you. Just keep loving him and believing in what God is going to do in his life:)

Toni said...

Hi Wani,
Gosh, I'm still learning so much about the new friends God has given us in IN. And I didn't realize you were addressing developmental concerns with your sweet boy. I just want to let you know I'll be praying and that I understand.

My Reece led us through a scary first year (and we have yet to officially "label" all his potential diagnoses, which is by choice for several reasons and with the partnership of our pediatrician). He was diagnosed with mild CP (he could standstraight up, VERY rigidly so, on your lap when you held him, back support and all, at about 4mos old. One of the many concerning signs for us.) Our doctor suspects, as do we, that he is on the Autism spectrum as well, albeit mild.

My first three spent 3 years in Ohio's Early Interventions program (I think it's called First Steps here???) They were all in therapeutic playgroups and tracked for their specific developmental delays and/or special needs. If you haven't already been linked to your county's early intervention program, I would encourage you to track it down. The social worker should be familiar with it (and if she's not, let me know). They would coordinate services for Joe, perhaps have a therapeutic playgroup for him to participate in, and would test him at 3 years old to see if he needed preschool services of any kind (which is covered with funding if they do).

And as a former RN and believer in the benefits of both conventional and holistic medicine, I'm with you on the sugar suggestion. If Joe's weight is not in question, sugar doesn't seem like a necessary "answer." Heck, my Reece has been in the 3rd percentile AT BEST. But he has shown progress from appointment to appointment (meaning height and weight gain are happening at a consistent rate, albeit below the norm for other children).

Praying for your family, Wani; that God will reveal to you exactly what Joe needs (and what he does not) to become all that God intends for him to be. And for peace and rest for you in the process.
p.s. "Mr. Carl" and little Nate bonded this week. I looked over at one point in Chadder theater and Nate had his little hand on Carl like they were best buds. Soooo cute.

Toni said...

Oh, and sorry for the chapter book. Just no quick way to say all that.

kilax said...

Poor Joe. It must be so hard for you to go through all this. My thoughts and prayers are with you.

Big Doofus said...

[Insert encouraging comment here.]

Couldn't think of one that didn't come across as insensitive. I'm not going through it like you are. When I sit and think about it, it makes me hurt inside because I can imagine what it would be like to feel so helpless when it comes to my kids and no parent wants that. There are obvious lessons here for you and Isaac. Some day you will share them with others and be an encouragement and a light for Christ.

Wani said...

yeah, I wish I'd hurry up and learn the lessons so we can move on but I guess it doesn't really work that way.

Karen_thrifty said...

Sorry to hear about your discouraging day. I'm not sure what kind of income your family has, but you may qualify for Medicaid or Health Choice as a supplemental insurance. Just a thought. I hope things get better. I'm sure you'll see God working and answering your prayers in amazing ways.