Monday, April 20, 2009
I dread these appointments. There's nothing fun about them, but it's nice to get information. So far the pattern has been to see one doctor and be sent to at least two more, so we'll see if the pattern continues, lol. I do expect the doctor to order some tests that we'll need to have done and then I'm assuming we'll be back for a follow up visit.
I'm still not convinced that Parker doesn't have autism. I know the developmental pediatrician and pediatric psychologist don't think he does, but I still don't understand their rationale for that. They say because he makes eye contact and at times enjoys social interaction that they're not thinking ASD, but I've seen plenty of children or heard of plenty that do the same and have it. My concern is that *if* he does have autism, we could miss 6mo to a year of treatments waiting for a diagnosis. It's hard to diagnose autism period. It's harder to diagnose a two year old, and Parker's only 19mo old -almost 20. But, it's hard to ignore all the symptoms even the ones that are mild. It seems to me that 1+1 should = 2.
Let's hope it doesn't this time. ;)
Saturday, April 18, 2009
I knew that Easter was on it's way a few months ago. Don't ask me how I knew, it's a secret. So I thought I'd be super Christian mom (or even average) and buy some of those Resurrection Eggs to teach Conner, my three year old about Easter. There are a dozen eggs and in each is a small object that represents a part of the death, burial, and resurrection of Jesus. Here's a link:
For the most part, it was way over Conner's head. There was some stuff I didn't want to explain yet like the crown of thorns, whip, linen cloth. But Conner loved the pony-aka donkey that Jesus rode into Jerusalem. The last egg is empty to represent the empty tomb. Conner didn't like that one, lol. When I opened it (oh, and I was SO excited) he said, "Oh no! It's empty!" I said, "That's the best one because it shows us that Jesus is alive!!" yipee!!! I tried really hard to convince him that it was a good thing that the egg was empty, but all my Christian/parent/teacher skills failed me at once. He said, "It's okay Mama. We can put the pony in there."
*sigh* I'll try again next year!
Friday, April 17, 2009
Since Parker's seizure, which was very mild, I haven't slept more than two or three hours at a time. I go to bed and lay there trying not to think the worst. My mind won't shut down and I end up awake until 1 or 2am. When I finally do get to sleep, I have nightmare after nightmare and wake up in a panic. I don't remember any of the dreams, but when I wake up I have the sensation that something is after me and I need to run. Last night alone it happened three times. Then Parker wakes up for his usual hour to two hour time of sleeplessness. By the time he goes back to sleep, I may get another hour of sleep before Conner wakes up.
During the day it's not so bad. I've been busy gathering reports and records from Parker's local doctors to take to the pediatric neurologist on Monday. I was advised to start a daily journal of all the foods that Parker eats, his temperment at various times throughout the day, his sleep habits, and stooling. His developmental pediatrician hopes we can learn more about what's making him cry so much this way. It's nice to have somethign to *do*. That's part of my problem at night. I can't *do* anything but lay there and worry. I do have control over that, or I should. I could be laying there meditating on scripture and truth instead of replaying my worst fears for hours.
The nice thing is that Jerry will be here tonight. I always feel much more calm when he's there beside me and he helps with the nightmares. I've had them before, and he talks me out of them. There's a good husband for you! I've never had them like this before, but I'm sure it's related to my stress and anxiety level right now and fatigue.
It's a scary thing to hold your child while they seize. It definitely got into my head. I'm so glad we can see the neurologist on Monday. We've seen her before and I liked her a lot. Maybe she can start to shed some light on what's going on.
I don't want to be told that everything's okay, because I know good and well that it's not. Maybe tomorrow I'll blog about the balance between hope and reality. I've been thinking about that.
Thank you to my friends and family! I'll keep you informed! Love you all.
Wednesday, April 15, 2009
I’m sure I had a rather stupid look on my face while I just stood there and watched him shaking. The whole event didn’t last longer than 7 or 8 seconds. It was very brief, but shocking.
We called the doctor’s office to decide if we needed to go to the ER, their office, or nowhere at all. We ended up going to the office and the hospital! Parker is fine. It must not have been too bad, because he didn’t get sleepy afterwards. He was eerily normal. He was crying in the van (not atypical) so I started a Diego video and he was fine.
His regular pediatrician examined him and said that he passed his “neurological” exam. She said that sometimes the brain just misfires. A single seizure all by itself is not cause for too much alarm. She did send us to the hospital for some bloodwork, but we were in and out of there in 20 minutes. When can you say you’ve ever made an unplanned trip to the hospital and left in 20 minutes?!!!
After the doctor’s office and the hospital, I brought him home, fed him supper and sat down to play with his farm set. I said, “Look Parker! It’s a cow!!” And that sweet little boy threw me a bone. He said, “Moo!” :D As if to say, “I’m okay Mama!”
Thanks for your prayers again! I wonder if the delays and symptoms of autism, sleeplessness, and incessant crying could be related to whatever caused the seizure. But there’s no way of knowing that until he sees the neurologist, so I’m trying not to worry. We’ve been through a lot with Parker lately and my overactive fear trigger went straight to brain tumor! Sheesh! I need to calm down!
So, that’s what happened. He’s okay and I am too. I’m taking a few deep breaths and enjoying a glass of sweet tea. Parker is asleep and everything is going to be just fine.
Saturday, April 11, 2009
Before we left the waiting room, the developmental pediatrician, Dr. Harvey took a picture of Parker’s eyes with a special camera that looked to be older than me. It is used for vision screening. When the picture came out Parker’s pupils showed up white instead of black. Dr. Harvey said, “Oh no!” He looked at me funny and said, “This is not good.” He tried the test again, with the same results. He said that that camera is only a screening tool and that he is not an ophthalmologist, but that is appears that Parker may be severely farsighted (can see well far away but not so well close up). He bet me a six pack of root beer that Parker will need glasses.
So, right away that put a stop to any cognitive testing because those tests involve giving Parker toys and tools and measuring how he manipulates and works with them. Those tests can not be done until he either has (and has adjusted to having) corrective lenses or until he passes a vision test given by an ophthalmologist.
The other tests could still be done, so we were able to complete most of what we went there to do. Our primary concern for Parker was autism. He has (in small amounts) several indicators of autism. The pediatric psychiatrist, Dr. Wilson evaluated Parker using a different screening tool than his regular pediatrician used a few weeks ago. This one was more specific and thorough. Based on his observation and interaction with Parker and the results of that screening tool he does not believe that Parker has autism. Praise the Lord for that!
Dr. Wilson said that Parker’s social interaction which is the core of autism was actually pretty well developed. He is not in “his own world”, makes good eye contact, enjoys playing and being around other children and seeks their interaction. He said that that is the hallmark of autism, the inhibition of social connections. He also said that Parker is pointing for what he wants (at times) which for some reason is another core trait of autism that he lacks. The scale put him directly between zero concern for autism and very little concern for autism. What a relief!
I had a lot of questions for Dr. Wilson. If he doesn’t have autism, why did he push his wagon in a circle for 45min last weekend? Why does he tip toe around the house echolating (repeating the same sound over and over)? Why does he flap his arms? Why does he cry so much? Why is he so delayed? So far there are no answers to those questions. So we are to continue to examine Parker.
Dr. Harvey, the developmental pediatrician saw Parker last. Parker had started crying by then. Most of you know that Parker cries quite a bit. He cried for about an hour and a half while we were there. It was very unnerving and we had no idea (as I usually don’t) why he was crying! If I knew, I could fix it, but we don’t know! Thus, more evaluations! Finally though, two pediatric specialists have seen the unexplained, prolonged crying first hand. I have been trying to communicate this problem to doctors and specialists for 19 months now and finally someone is recognizing that is a problem and that it does need attention. Praise the Lord for that too.
Dr. Harvey is primarily concerned with Parker’s hypotonia/gross motor delays, his speech delays, and the unexplained, prolonged crying. He is sending us to UNC Chapel Hill to see a pediatric neurologist to have the MRI, EEG and any other tests the doctor there sees a need to have done. He also wants to have Parker’s blood tested for metabolic and genetic disorders. I asked him is there is a specific disorder that he is looking for or if there was any disorder that from his interactions with Parker that he thinks Parker may have. He said no and that if there were he would tell me.
So, Parker probably does not have autism. We have to dig around a bit more to determine if he has some other disorder or to find a cause for the delays.
I feel great. I’m so thankful that it’s probably not autism. I have to say “probably” because I was so prepared to receive a diagnosis of autism and rather convinced that he may have it that it’s hard to let go of it. I’m sure that sounds strange! Whatever it is (if it’s anything) Parker seems to be getting better and better instead of worse which is wonderful. I am so relieved, like a weight has been lifted.
It was terribly difficult to walk into that office today. I have never been more frightened or dreaded anything more. I knew that there I would have to face my greatest fear that something could be very wrong with my son. I was praying and asking the Lord to help me and give me the courage to go. In His great love for me, He reminded me of a verse I’d read not so long ago:
“For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; I will help you.” Isaiah 41:13
I can’t ask for any more than that. It means so much. Thanks Lord!
Friday, April 10, 2009
Even though he didn't want to part with any bread to feed the ducks, Parker did something amazing!!! I was doing my usual "the whole day is a speech lesson" drill and pointing to the ducks and saying, "Duck!! Duck!! Quack-quack!!" over and over again. And low and behold, the child said, "duck!" a few times and "quack-quack" too! I was so excited! That was the first time he'd seen real ducks up close and the first time he'd repeated something I said so...easily? We had to repeat "get down" and "all done" hundreds of times before he said them. But he said, "duck" and "quack quack" right away.
THEN!! We went on a golf cart ride and everytime the cart would stop Parker would say, "Go!" Holy cow! The child is talking! Not only that, but he looked at ME and said, "Go!" This is a very good thing.
THEN! We were reading a book that had a picture of a cow in it and I said, "Cow! Moooooo!" A few pages later there was a picture of that same cow but from a different angle and with a different background and Parker said, "Mooooo!" :D
Fuel for Hope.
Thursday, April 9, 2009
I have always wondered why on earth people put those harnesses/leashes on their kids. They have always bothered me. Mostly I wondered why people didn't just teach their kids to listen. The harnesses reminded me of walking a dog and while I do love my dog, children are so much more valuable than dogs.
And I guess that's the point. Our children are much too valuable to take unnecessary risks with their safety. You can train most dogs to heel, but you would still use a leash near traffic for their own protection.
I never imagined having a child with significant developmental delays or a possible developmental disorder. It never occurred to me that teaching a child to 'listen' may be complicated. When Conner, our oldest and typically developing child learned to walk, it was *work* to teach him to come to us when we called him, to stop when we asked him to stop, or to stay close to us in a store. He just turned 3 years old and we're still working on those things! I mean work!!
But when you work hard at something and reap the rewards, there's always an opportunity for pride to come creeping in. The misconception that "My child listens because I taught him to because I'm a good parent and I know what to do and if your child doesn't listen it's because you're not doing it right and that's just poor parenting." How's that for a run on sentence? I promised you in the first post I'd give you some of those! But, seriously. We think that way. I do and I think you do too.
But what Parker's delays and great shows of frustration (aka tamtrums) have shown me is that sometimes you can teach your heart out and reap limited results.
I said I would never have one of those silly harnesses. But clearly I do from that picture of Parker with a monkey on his back! The tail is part you hang on to. So, I ate my words! In the interest of my child's safety, I got a monkey pack so he could get out of the stroller and still be safe while I'm still trying to teach him to 'listen'. Wish me luck with that last part. The going is rough and progress seems to be happening at a snail's pace!
The picture above shows Parker walking on a pier at the lake. He loved it and didn't have to hold my hand. Since he can't stand to have anything touching his hands, that is a wonderful thing for both of us!
Thank you Lord for the Monkey Pack!
Wednesday, April 8, 2009
A boy and his dog!
Tuesday, April 7, 2009
We went inside to pay for our things and there was a model train chugging around a track near the ceiling. Parker, who loves anything that moves in a circle noticed it before I did, pointed with his finger and said, “Choo-choo!!”
My throat closed and my eyes filled with tears. The child is 19 months old and he finally said his first words!! He has said a few words like “all done”, “stink stink”, and “get down” so technically they weren’t really his first words, but let me explain.
Parker uses the phrases “all done” and “get down” interchangeably. After many months of very direct instruction ;) Parker started saying them so I’d get him down from his high chair or out of a swing. He is using them appropriately and is communicating with those phrases. We are very thankful for that. But it’s really more of a habit than anything else. It’s a hoop he jumps through to get down.
But the train! We had never seen that train! We have several books at home about trains. When I read to Parker, I don’t read the text. I choose something I want him to learn how to say. On every page I find that thing, say it twice and touch it with his finger. We have some toy trains he has played with a few times. But how he made the connection from the books and toys to that train in the nursery I don’t know. That was all Parker!
It was the first time he ever called something by one of its characteristics. It was like he was naming it. He has never called an object or a person by their name, so this was a giant step for him. A heartwarming moment of hope. My mind goes, “If he can see a train and say “choo-choo”, he should be able to say anything.” It doesn’t take much to get hope stirring again. Just a tiny little something every now and then. Thanks, Lord!
Monday, April 6, 2009
Praying for you guys!! (((hugs)))
What a nice surprise! We are at White Lake and the weather report said it was supposed to rain all day today. Not just a little here or there, but literally all day. It is after 1pm and we have yet to see a drop. The sun is shining like a beautiful gift from Heaven. It is very windy, but we can play outside in the wind. I just need to make sure Stewart, our Miniature Schnauzer doesn’t blow away!
And we have plaaaaaayyyyed outside today! As soon as we were able, Conner hopped on his bicycle and Parker and I walked with him to the lake. We counted 17 ducks swimming and riding the waves. Mind you, this is a lake, not the ocean. The waves were caused by the 30mph winds, but we didn’t mind and the ducks didn’t seem to either. Parker, who is getting good at pointing, pointed to the ducks and signed, “me” indicating he wanted a duck. If his Daddy were here, I would have sent him into the lake after one, but he couldn’t join us this time. And any of you who know Jerry, know that despite his undying loyalty to me and the boys he would have laughed at me “sending him” into freezing cold water after a duck anyway!
We’ve been to the playground, and after a fun snack of cheese crackers and juice boxes in the wagon, the boys played in the street for about an hour. **GASP** Did she say, “play in the street??” Yep. In this little RV community, the streets are more like glorified sidewalks and the property owner/manager has made it clear that children have the right of way here and everyone better kept it slow. I have yet to see another vechile drive down our street today anyway. So, in the street, Conner rode his scooter, Parker’s tricycle, and his bike. Parker amused himself for the longest time by pushing the wagon in a circle. He had a few breakdowns when it would roll off the pavement and stop moving. But he had a great time. He also pushed himself backwards on his tricycle a few feet. This is good because he has just learned to do that and I understand they usually go backwards before they learn how to move forwards.
I was prepared for today to be gloomy and wet. But it sure has turned out to be nice. Sometimes we don’t get what we want and we’re disappointed. Isn’t it nice when the opposite happens? This is just what the doctor ordered! I’m going to go enjoy it some more!
Sunday, April 5, 2009
Saturday, April 4, 2009
Happy Birthday Nana and Conner!!
Friday, April 3, 2009
Thursday, April 2, 2009
A couple of weeks ago I met with Parker's case worker from the CDSA. She said that she would make arrangements for Parker to see the developmental pediatrician tomorrow. That she would make sure that date was open for all the people who need to be there and call me back. I never heard from her so I called today to make sure we were still "on" and she said that Parker's appointment had been made for next Thursday instead. I suppressed the urge to make a smart comment along the lines of "I guess I didn't need to know." *deep breath* Fine.
Wednesday, April 1, 2009
1. An EEG and MRI
2. An occupational therapy evaluation
3. An oral assessment
4. A swallowing study
5. A psychiatric evaluation
6. A medical evaluation
I aked about the medical evaluation. I told them he just saw his pediatrician for his 18mo well visit. Wasn't that a medical evaluation? Yes and No. Evidently there's a different king of medical evaluation. Ooooo-kay. And mind you, that that list is BEFORE he has even seen the developmental pediatrician.
He's scheduled to see the developmental pediatrician this Thursday. The problem or concern I have about the length of this list is that every time you see a specialist or a therapist, they refer you to at least two more doctors or specialists. And everyone you see has at least a couple of evaluations or tests to run.
So 6x2=12, right? And then 12x2=24 and where does it all end? Gee Whiz!
Tuesday, March 31, 2009
I thought the last couple of years were a little bit difficult. I distinctly remember thinking, in my optimism, that things can only get better. It's a nice, positive way to look at hard times. We dealt with loss of income, Parker needing an orthotic helmet 23hrs a day, and a very close friend's two year old was diagnosed with leukemia which was quite a blow to our family as well. But I still had tons of hope just bubbling up all inside of me. Cole was going to beat the cancer, Parker's skull would be reshaped and Jerry would find a better job. The Lord was going to take care of us.
But I also made the considerable mistake of thinking, "At least it can only get better from here." In other words, "It can't get any worse."
But, hope is a tricky thing. It makes you vulnerable and can set you up for terrible hurt and disappointment.
*trigger* When I first started to miscarry our baby last January I had hope. I hoped it was benign bleeding and even after passing everything I still hoped right up until the last ultrasound that somehow the baby was still in there. That taught me about hope.
Parker will see a developmental pediatrician for the first time this Thursday. Throughout this whole ordeal with his delays, people's sympathy tend to fall into one of two categories, both based on hope. One group hopes that he's just delayed (that he doesn't have autism). The other hopes that since we're catching it early he'll be better off and that treatments are available.... Both are well intended and appreciated.
But I've learned about hope. It's a great thing to have and for some reason I can't seem to shake it. In a way I'd like to because it scares me now. I know what it can cost you. But I named this blog Hope and a Future because the Lord promised each of us that His plans for us were to prosper us and not to harm us, plans to give us a hope and a future. (jer 29:11)
Right now I'm hanging by a thread on that verse. I don't trust hope anymore, but I do trust the Lord. I trust Him because I know I can. Even if He doesn't stop the bad things from happening, He's always a prayer away and He comforts me and helps me. Whatever it is, I know I don't have to face it alone. That's worth a lot.
So, don't give up on me Moriah! I do hear what you're saying! ;)
Monday, March 30, 2009
My two little goofballs playing at the zoo last fall. I have several short video clips of those two playing in those water buckets. I love them all, but this one is my favorite.
Jerry and I bought a year long family pass to the NC zoo. It's not that far from where we live right now, so the boys and I can go for the morning. They enjoy the animals, but what they really like is playing in the sand box and this chalk station.
There is a giant chalk board wall behind them. The zoo provides tons of sidewalk chalk, spray bottles, and paint brushes for the children to play with. It serves as a way to stay cool and for the children to actually play. So much of the zoo is just looking, so it's a welcomed spot for a mother with two young boys.
When this video was taken, Conner was 2 years and Parker was 14.5mo old and was just learning to walk. I love it becuase they are so happy. Life can really be a struggle sometimes, so moments like these I tresure.
The name of this blog is Hope and a Future. Moments like these give me hope for Parker and hope for our family.
Sunday, March 29, 2009
Wednesday, March 25, 2009
And here is the after:
He looks a lot better than he did.
I'm excited because Lost comes on tonight and that's one of the two shows I'm hooked on. The other is Big Brother (I know, I know, it's aweful). So, I've got to go get ready to watch that which mostly involves making sure the boys are in bed on time! :D
Tomorrow is a full day, lol. Parker has a speech lesson in the morning and we need to pack. After naptime the boys and I are driving to Jerry's parents' house. I have a follow up appt on my wisdom teeth on Friday and Linda (my MIL) is keeping the boys for me. After that, we'll spend the weekend there where we'll be joined by Jerry-my baby daddy. Babies daddy actually and my dh. He's alright. :D Here he is:
Conner's cheeks look full because they were stuffed with candy that's supposed to go on the bunny house!
So, anyway! That was my day and that's my family!
I named this blog, "Hope and a Future" from the ever famous scripture found in Jeremiah 29:11 where we're told that the Lord's plans for us are good. If there is a single verse in the Bible I could call my life verse, that's the one. I wish it could be one that noone knows about so I'd look more like a Bible scholar, but that's the one! Sorry ya'll already know it!
I hereby promise to misspell words regularly, ignore the rules of grammer and punctuation and capitalization too. I hate all that stuff. This is my blog dang it, and I'm not stressing out over it.
Join me if you will!