I have been putting off this post for almost a month now, time to bite the bullet and get it out there…..
Derby has been our little stubborn pistol as of late. The kid wants to move, he wants to feed HIMSELF and he wants to do things HIS WAY. The feeding has really got me frustrated. Loen is a good 2 pounds and 2 inches taller than Derby. Loen will drink 9 ounces of milk but I have to fight Derby to take 5. Loen will eat just about anything, but Derby is on a crunchy diet. Goldfish, Kix, snap pea crisps and his favorite yogurt. He clamps his mouth shut when I try to feed him something healthy and will throw the food he doesn’t want off of his high chair. I’m pretty sure the stubborn streak does not come from me. He has been hovering in the 16 pound range since December. Sometimes we are 16.5 or 16.12 then 16.8. I gave away his 6-12 month clothes because I thought we had grown out of them, but alas I’ve had to go buy more pants since he crawls out of his 12-18 month size. It is frustrating and depressing and I don’t know what else to do.
Then we had our biannual CCS evaluation (California Children’s Services provide all of Derby’s therapy) last month. We see Derby do a little more everyday. Play harder, more independent, use his left hand. Therapy has done wonders for that little boy. While he may get frustrated and yell when they work with him, he will go home and use his new found skills to say climb up the ottoman. To be eligible for services a team of doctors go over his therapy notes, assess him and then decide if he still qualifies. Tadd was unable to make it for the first evaluation, but he came this time. Previous team meetings focused on all that he has accomplished while this one was about areas where he is lacking. Which is understandable, because it is a meeting of the things they want to work on and what their goals will be for the next 6 months. It is still hard to hear a laundry list of things your son is unable to do or doing incorrectly. They have been addressing his left sided weakness since the beginning of therapy. In the past few months he has unclenched his left fist to crawl,pull himself up to cruise and use it to help pick up heavy toys. I was feeling good with his progress , but then the CCS pediatrician blurts out “Ok we are going to call this CP with left sided hemiparesis” In laymen’s terms she diagnosed him with Cerebral Palsy resulting in left sided weakness. In the back of my mind I knew we were going to be dealing with limitations for awhile, they weren’t going to magically go away. Though when she said “CP” I had to swallow down my tears. I am fiercely protective of my children. I hate when people talk about things that can’t or won’t do, I want to bite their head off. I thought of how people would react to this diagnosis. Would they say “Ahh it makes sense since the kid has cerebral palsy” and just write him off? Would they think the worst, imagine a kid in a wheelchair, etc…? CP is such a broad spectrum diagnosis. I imagine it like saying your car was in a car accident which could range from a little fender bender to being totaled. Derby is not extreme but we don’t know where exactly he falls on the scale. Infants brains are amazing with their ability to rewire and deal with such obstacles. In a few years it may be unnoticeable, but we just have to wait and see. I thought back to all of the cranial ultrasounds that were negative. What could have caused this brain damage? In nursing school I remember an instructor saying most causes of CP are due to hypoxia. How many times has Derby been hypoxic? His agpars were 1,5, and 9, he was vented for 9 weeks, he hasn’t had the easiest time recovering from surgery, ughhh which was it? It is more prevalent in preemies, low birth weight babies and twins…..um check check check. Tadd asked the doctor not to label him with CP for now. It is inevitable but they said they would wait until he is 2.
So now all of our readers know. I should give fair warning I still don’t want to really talk about it. I should also warn I might give the evil eye if I hear any disparaging remarks about him, but hey, isn’t that a mom’s right?
He is our wonderful, sweet, stubborn, and amazingly tough little boy.
9 responses so far ↓
1 Kristi // Jun 8, 2009 at 6:54 pm
Keeping Derby and you all in my prayers. I’m sure Derby will prove everyone wrong!!!!!
2 Jayne // Jun 8, 2009 at 8:16 pm
Oh, but he’s beautiful and bright eyed and his exuberance shows right through the photographs! I agree that these labels are stupid. He’s come through so much, and he’s JUST STARTED.
3 Dee // Jun 9, 2009 at 10:28 am
Derby may have to work a little harder than some, but he has already accomplished so much, and I know he will continue to amaze and delight everyone! He is such a blessing in every way. His eating habits just happen to be very similar to his Fauxbro Andrew . . . a picky little carb-head!
4 Brandy // Jun 9, 2009 at 10:56 am
I agree with the other comments. As we both know, children are resilient and they tend to prove every one wrong. I wish they never said such a label, but its just another milestone that he will excel in and amaze everyone. Thinking of you…
5 Suzanne Draher // Jun 9, 2009 at 5:37 pm
Tadd and Hava!!
You should be so proud of the accomplishments your two angels have made. They bring us all such happiness and joy. You two are such great parents. Tamie constantly at work tells me what wonderful parents you are to Loen and Derby..of course I agree. Derby and Loen have come such a long way. They are truly happy little souls. Those two will constantly amaze us with their accomplishments. Remember Doctors aren’t God and Derby will excel. Also, Derby takes after you Tadd tiny at the beginning but he will take flight…. God Bless
6 Sarah Klump Johnson // Jun 12, 2009 at 5:22 pm
One of the nicest guys I know is a past coworker. He is funny, kind, caring, and considerate. He is the life of the party and plays the best practical jokes. He is also a physical therapist. We hit it off because he graduated from Slippery Rock University with his Masters degree like I did, and we both ended up in Ohio. He can motivate his patients like no other therapist I have worked with in the past 12 years. His patients adore him. Oh, did I mention that he has CP? He does, and walks with either a cane or crutches depending on his day. Hava, you are right. CP has a wide spectrum, and little brains have an amazing ability to rewire when loved, encouraged, challenged, and supported the way you and Tadd have done so completely with Derby and Loen. None of us knows what your little man is capable of…including the doctors. He is a very lucky little boy with fantastic parents. Take care you guys.
7 premature worrying // Jun 12, 2009 at 8:04 pm
IT TAKES AT LEAST TWO YEARS FOR PREMATURE BABIES TO CATCH UP..EVEN LONGER FOR BOYS.
my kids were 25 weekers. my son was always lagging behind my daughter in every way. they wanted to diagnois him with cp while still in the nicu for swallowing issues. they wanted to lable him with autism at 2 for delays in basically everything. i pulled him from therapy. At 3 1/2, he is TOTALLY AND COMPLETELY “NORMAL.” he outgrew the swallowing issues and came out of his shell..
he is the most affectionate child i have. he is beginning to sound out words. he learned his letters and numbers before his sister.
he is shorter than his sister but i’m not worried.
give your child a chance to fully catch up before you give him a label.
i regret worrying as much as i did.
8 Heather Heers // Jun 14, 2009 at 7:22 am
You and Tadd are such amazing parents. And Loen and Derby are so sweet. The kids and I had a really great time visiting with all of you. It is so hard to hear anything is wrong in your child’s development. In first grade the teacher noticed that Kyle was having trouble with his handwriting. In second grade we followed up and he was assigned time with an Occupational Therapist. He also went through visual perception testing. He scored low on most of the fine motor skill items (2 to 3 years younger than his current age). He will be going into fourth grade next year. He had a great third grade year–much progress in comprehension, maturity and skill. While it was difficult to hear these things about him we knew that he needed help–especially in the upper school grades we feel that having him get the therapy now will be beneficial. An IEP was written up for him which will continue until he no longer needs any outside help. Because of this we are entitled to get any help for him that he may need. I am glad that we got started on that early. The other thing that is difficult is that Hannah excels in everything she does. I think overall we have reached a good balance. The fact that you and Tadd keep up with everything in Loen and Derby’s development will guarantee that as they get older they will have already had that little bit of help that they needed early in their lives. I feel like I am rambling on!!! Just keep doing what you are doing. I will be out again in September for a couple of days (by myself!) so maybe I could stop by for a short visit again to see the kids. I am looking forward to that visit as I did not get much quality time with my parents with the kids there too. Hang in there and give Derby and Loen a hug for us!
9 Faux-pa Andy // Jun 24, 2009 at 11:24 am
I was going to say he eats like Andrew but then I saw that Dee already said that. Derby is a great little guy and has been through more than most people experience in a lifetime. We all just need to keep praying and looking to God for support. He has wonderful parents and all the family and faux-family support anyone could ask for. He will be fine. I didn’t see my Mom’s comments in here so she must have e-mailed you. She has a real innate sense for these things. Derby just needs some time.
Leave a Comment