Tuesday, April 28, 2009

Sugar and spice and everything nice.........

Over the last few posts James has gotten most of the publicity and rightly so. The only drama Audrey has going on in her little life (thankfully) is that James won't share and she doesn't always get what she wants when she wants it, like caaaake! However, Audrey does love attention so I figured I'd let our little peach get back in the spot light for a day!! She has really grown up since we moved and it's just not fair, although it is fun to watch and be a part of!! If you look up the word "ham" in the dictionary you'll see a big ol' picture of Miss Audrey Grace! She loves to laugh, make people laugh and just have a darn good time with everything she does. Oh how I pray that she is blessed to keep this carefree, just lovin life spirit that she has. AND if it's possible she gets more beautiful every single day. If her mama and daddy weren't smitten before........She continues to tend to her brother like a little mother hen, constantly bringing him things she knows he wants or needs. The other day (with out me telling her to) she took him the first grape I handed her and came back for hers. Bless her little heart, it's like she knows she can get around faster than him! It's precious to watch her be so loving towards him. But she still has her girly fits and slaps him in the head when he makes her mad! She continues to wipe things up when she spots a mess and believe it or not she actually helps me put the clothes into the dryer. Her little voice can melt the stoniest of hearts and it keeps getting more and more southern with each passing day. You have to watch out 'cause she is a little mocking bird lately, repeating just about every new word she hears. Just this morning when I asked her if she had poo-poo she grabbed her diaper and said "poo-poo" just like she'd been saying it all along. She's a hoot.She also has this new found obsession with rocks. Big rocks, little rocks; she'll find a rock any where and keep it in the palm of her hand for as long as she can. Ha, today I saw this black lump on the floor in James' room and started screaming. I just knew it was poo-poo but upon closer examination, I found it was just a rock!! I wonder how it got there!! She is a wanderer. She is never still, ever. Only when she sleeps. When she is watching a movie, she's constantly in and out of the room. When we go out in the yard she doesn't stay with the group. Saturday while we were testing out their new pool, she must have gotten in and out of it 50 times and made two complete rounds around the back yard (we have a big yard people!) and the funniest thing to watch is that she is not in a hurry while doing this. She just meanders around, checking things out. The best part about her is how much she loves me and Jon. She does a little jig every afternoon when her daddy gets home and she tends to have serious melt downs when I leave a room and she can't come with me. It's a joy and a blessing and a big adventure to be her parents and we are loving every single minute of it!!!

Friday, April 24, 2009

This is gonna be a long one.....

James had his pt evaluation today and I am in l-o-v-e with his therapist! She is more than I could have ever hoped for personality and knowledge wise and she does in home care which makes it sooooo easy for me. At first she asked tons of questions about his prematurity and any medical conditions that he has. Then she gave him some toys and watched how he played with them. Like, if he could put the blocks in the cup and then dump then out, if he can throw a ball and how he throws it, if he uses both hands properly (he does), if he could put the peg in the hole (it took him a few tries but he got it!) and things of that nature. He did everything wonderfully and she said that his problem solving skills and object manipulation skills are great. With everything that he does, he is operating on the 14-16 month scale so at this point he has no developmental delays. That may confuse some of you since he is 18 months but remember, he was two months premature so developmentally he is only 16 months and boys are usually 1-2 months behind that so........She was very pleased to see how well he uses his left leg to climb into chairs(yeah, we've kinda out grown the Elmo couch around here!)which leads her to believe that his problem lies just from the knee down. She was also pleased to see how well he is walking around. She tested his muscles to see how tight they are and said his left leg is really, really tight. She showed me 3 exercises to do with him and I was so excited to see that the first one she showed me was the one that my sister showed me and I've been doing it on and off with him for the past couple months! At first she said that he will definitely need to be fitted for a brace that he will wear from about mid-calf down and that will help give his ankle support so he can start putting weight on it and it will also stretch the calf muscle out. Then maybe we could do some botox injections later. After working with him for a while she decided that he probably needs to have the brace and botox at the same time, that that will benefit him more since his muscle is so tight.
Even though she said right now he has no delays if he doesn't get the therapy he needs he will in the future, especially at this point in his life. The time between 18 months and two years of age is so crucial because there is so much development in that time period. The neuro also told us this and that is why I have been on pins and needles these last two weeks waiting for therapy to start. I can breath a little easier now! One of the first questions she asked was if I understood that CP has a very broad spectrum. She asked if the neurologist had explained that and I told her no, not really. We both laughed and she said that in her experience with neurologists she has found that sine they are so intelligent they tend to not be able to relate info very well to those of us who are not so "intelligent"! She went on to say she has treated patients with CP as serious as comatose state to being so mild that you aren't able to tell AT ALL that something is wrong. She automatically knew James' was a very mild case. Music to a mother's ears! She also explained how CP affects someone. The part of his brain that is damaged cannot send the message to the muscles that are affected by that part of the brain that they need to work. So, we have to train another part of his brain to get the message out and therapy is the way to do that.
The evaluator from our state program, Babies Can't Wait, came to the house today as well. Since he has the diagnosis of CP he is automatically eligible for the program. I fell in l-o-v-e with her too!! Once again I had to answer a million questions and sign tons of papers. She came when they were eating lunch and was just blown away at how well he eats and the fact that he uses a spoon so well. Once he got down, she pulled out her box of toys and started testing his abilities. She was pleased with all the skills he has and told me some more things to start teaching him. She also said he doesn't have any developmental delays. So I asked what she thought about his development in the future, she said that with therapy and me teaching him new things and with Audrey motivating him with all the things she can do, she really believes that he will thrive beyond belief! Again, music to a mother's ears!!! Oh, and his language skills are right on target so he wont need any speech therapy right now! Once they get all his medical records and evals, the BCW team will come up with a "plan" for James as to what route they are going to take with him and we will go from there. She told me that this program is designed for me to get whatever I want for our son. What a blessing!!
Our week started out pretty gloomy but has ended on a high note! We've still got a long and winding road ahead of us. Insurance is not easy to deal with by no means. Continuous doctor appointments and therapy sessions are going to get old. The stretches are uncomfortable for James to endure. He is not going to like having a brace on his leg or to have to get shots on a regular basis. But today was a GOOD day and we must give all the praise and glory to our heavenly Father. His grace is sufficient!!

Wednesday, April 22, 2009

Son, you have our attention

now would you please stop causing your father and I to age waaaay before our time? Please?
Monday night (the night I get home from Birmingham) about 11:30 James woke up crying so naturally I went to check on him. When I picked him up I felt him taking deep, fast breaths. So deep he was retracting. He wasn't wheezing or really "struggling" to breath but I knew he wasn't okay. So after a few minutes of debating I decided to call the after hours nurse and see what I should do. Thankfully she called me back very quickly and once I told her what was happening she immediately said to take him to the ER. "Oh great, here we go" I thought to myself as I was racing around getting dressed and trying to convince Jon it was best for him to stay here with Audrey(no need in dragging her out in the middle of the night) and to "try" and get some sleep. (It's CRCT week at school.) He stayed and off James and I went to Tallahassee. It wasn't a total emergency yet so I decided the best thing was to take him to TMH, they have a NNICU there and it's not a small town hospital, need I say more? Hey, I grew up in a small town, I can say that!!
Surprisingly I was pretty calm the whole way there. I kept ticking James off though because every 2-3 minutes I was turning the light on to see if he was okay and I knew it would keep him awake and I didn't want him to go back to sleep. By the time we got to the ER I had convinced myself that they were going to admit him for the night so I went in all prepared for the worst. But they didn't, thank goodness. They took us right back (a perk of being a small child!) to ask you all those questions that seem so silly at the time. I was thinking "can't you ask me these stupid things later and see about my son first?" Seriously. And when I saw the scale he had to be weighed on my heart skipped a couple beats. I hadn't seen one of those things since they left the NNICU, not exactly what I needed at that moment but whatever. James hated everyone that looked at him. Whether they were attaching something to him or just smiling at him he burst into tears. Can you blame the little dude? I mean it was almost 1:00 in the a.m. and he has had his fair share of needles and machines and wires in his short life time.
Once he finally accepted the pulse ox monitor was going to be staying on his toe, he calmed down. Around 1:30 he caught his second wind and started charming the pants off of every one that walked by. The respiratory therapist came and he gave him his first breathing treatment. Well, really I did because it was tricky to get him to let that "hose with the funny mist coming out of it" close enough to his face to do him any good. He warmed up to it about the time it was finished. And when I say warmed up, I mean he stuck his tounge down in it and wiggled it around! Then the doctor came around and listened to him and said he probably has reactive airway disease. Meaning he is too young to be diagnosed with asthma. Nice.He had to get a chest x-ray, NOT fun. For some reason little dude didn't like the heavy vest he had to wear in the dark, cold room. Go figure. It's about 2:30 by now. He gets another breathing treatment and by this time he really doesn't mind it , except when he turns his head and it gets in his eyes! He is breathing much better by now and the next hour we sat there and waited for the doctor to come back around seemed like an eternity. I was running out of things to keep him occupied with, I myself was about to keel over I was so stinkin tired. Then I remembered my ipod. Jack pot. I would have given a million bucks (okay maybe not a million) if I'd had my camera with me. He stuck those ear buds in his ear like he knew what he was doing and sat there swaying back and forth to Taylor Swift for the next little while. It was hilarious. The doctor finally came and said his chest x-ray looked great so he probably does have reactive airway disease and the little cold he has set it off. They don't diagnose it as asthma because of 2 reasons: 1. He's too young and a lot of kids out grow it by the time they are three and 2. He hasn't had enough episodes to be a real concern right now. They sent us home with an inhaler and a mask in case he starts wheezing and coughing real bad. And he'll take an oral steroid for the next 4 days. I had to give him the inhaler 4 times yesterday and boy does he despise that thing! I only had to give it to him twice today so he is definitely on the mend!
Other than his episode, getting home at 4:30 yesterday morning and being a total zombie all day yesterday, we've had a pretty good week so far. We had an absolute marvelous time at daddy's. I'll post on that next time. I do ask though that you remember him in your prayers please. He left Tuesday on another trip to Tanzania, Africa and it will be a hard trip for him this time. It was short notice and it will be very emotional for him with out Obey there. I'm thankful though that he's not alone, Bro. Paul Blair is with him and he was one of the men to go with him the first time.

Monday, April 13, 2009

Easter 2009

We had a wonderful Easter weekend and I hope all of you did! My sister and her family came Thursday night and stayed until yesterday after church. It was soooooo nice having all the extra space for company! It is truly amazing how fast 4 kiddos can destroy a relatively clean house, not to mention 4 adults! We snagged another egg hunt Saturday afternoon and this time it was Peach that was all into finding eggs. But she rarely put any in HER basket! James got woken up early from his nap and wasn't to friendly at the time of the hunt but he did manage to get some! I had so many good pictures of the children I decided to make a video of them instead of trying to jam them all in one post or spread them out over many. But while I was going thru my pictures, I noticed that there are hardly none of Hannah and Matthew with the twins. And the ones we did manage to get on Sunday, well you will be able to see that no one wanted to cooperate, at least not at the same time!

Thursday, April 9, 2009

Grace sufficient

In II Corinthians chapter 12, the apostle Paul speaks of a thorn in his flesh and asks the Lord three times to remove it. The Lord answers him with this: My grace is sufficient for thee: for my strength is made perfect in weakness. Paul responds with: Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ's sake: for when I am weak, then am I strong.

A few years ago, when we were going through the struggles of wanting but not having children, this was one of two verses that I clung to as if my life depended on it. I read it and quoted it to myself every single day for almost two years. It brought me much comfort back then and it will bring me that same comfort in the days ahead. Now it just comes with a different meaning. We met with the neurologist today and James does indeed have Cerebral Palsy. His EEG was normal but the MRI showed slight damage on his brain. He has a very mild case of cp and the doctor feels confident that with therapy(lots of therapy) he has excellent potential to progress rapidly and function almost normally. The MRI also showed that he has a lot of fluid in his ears and needs tubes. He also said a visit to the orthopedist is in the very near future for shoes and or braces for his feet. We went in his office today expecting this news so it was not a shock or gut wrenching blow like last time. But it's still so very hard to know for certain that he has this disease. However, we are so thankful to have only had to endure 3 weeks of limbo. We know what his infirmity is and now can move forward with that knowledge and get our son the best care possible.
We are heart broken for our son and dread the obstacles that he will have to endure through out his life. As his parents we dread the obstacles that we will have to endure for him. But our hearts are filled with joy tonight because our gracious Lord mercifully gave us the children we so desired. And granted such a precious little being to be our son. His smile lights up any room he enters and he constantly steals the hearts of all those he comes in contact with. Again we ask humbly that when you pray, remember us.
Let us therefore come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need. Hebrews 4:16

Wednesday, April 8, 2009

Got Milk?

James and Audrey had their 18 month check up today and once again we left feeling reassured that we are doing a good job of raising our kids and so thankful that the Lord has blessed us to have such a wonderful pediatrician. However, even though we left feeling good about our efforts in the growth of our children, we also left with splitting head aches because they were BAD the whole time we were there. And I mean BAD. What happened to my sweet, quiet, content to be in the exam room children? The children that only wanted you to hold them, not get down on the nasty floor? I'm telling y'all they were getting kinda bad before they hit 18 months, but 6 days ago the flood gates opened. Don't get me wrong; they are still the sweetest children ever and we still have a blast on a daily basis (even thought that blast may only last 10 minutes!) but they whine almost constantly now and are into EVERYTHING. If a mess can be made, they will make it! For example:This happened with 30 seconds this morning. I must say though that she has smelled baby fresh all day! Any way, back to the title. Doc said they are both growing beautifully on their growth charts and he is very pleased.
Audrey: Height-30 Weight-20.12 Head 46.4
James: Height 29.75 Weight 21.8 Head 46.8
Then he asked "They are drinking milk every day, right?" Uh-oh. I told him no and before I could even finish he says "Most children don't like the taste of milk but it is very important for them (especially Audrey) so this is a battle that you must win." Awe man. I groaned and asked him didn't he know how hard that this was going to be? He laughed and said "Just leave and let dad take care of it!" Now, I know that not all pediatrician's take such a hard line on the milk issue (because you can get calcium from other things) but ours does and I feel very strongly that our children are as healthy as they are today because he took such a hard line when they were infants and in their most vulnerable stage. So, I am going to follow his "rules" once again and engage in the battle of 4-6 oz. of whole milk twice a day. And it will be a battle, let me tell ya! A long time ago I tried chocolate and strawberry flavoring. I've tried cold and I've tried warm. Any other suggestions out there?
Here are a few pictures from their first Easter egg hunt last Saturday! We all had such a good time and James really caught on to putting all his eggs in one basket! Audrey was more interested in trying to break into the candy than finding eggs!

Friday, April 3, 2009

MRI's, Playing in the Rain, One Happy Family!

James had his MRI yesterday and it went well. Even though the day started out pouring rain, it went much better than the EEG!! This time I made sure to get all the information on procedure for the test beforehand so we wouldn't get any surprises when we walked in! We left a couple hours early and headed to the mall since that worked really well last time on distracting him from being hungry and thirsty. We rented one of those "car strollers" from the mall and he had the time of his life rolling around in it. He did exceptionally well with out eating or drinking (except for the time that I picked up a bottle of perfume to smell it and he spit his pappy out thinking it was something to drink!) for the 3 hours we had to kill. When we got to the center they immediately took us back to get all our information and explain to us exactly what would take place. The nurse (which happened to be a man and the manager of the facility) and the anesthesiologist were soooo nice and very easy to talk to. He explained exactly what both of the meds he was going to get were and told us how safe they were. Even though they were very attentive to us and our feelings, every now and then they would inject some lighthearted humor which made the whole process much more relaxed and peaceful!! In the middle of our conversations with them, we discovered that the anesthesiologist's in-laws attend church at Vero Beach, small world huh?They gave James an oral medicine to make him relaxed, well really to make him drunk again, so that he wouldn't fight as much when they inserted his iv to administer the medicine that would actually put him completely out for the scan. If only I'd had my camera because it was hilarious! He got real droopy eyed and loopy with a continuous grin on his face. He kept kissing me and sticking is tongue out and giggling. Jon laughed and said "at least he's not a mean drunk!" About ten minutes later I had to lay him down on the table and try my best to comfort him while he was getting poked and prodded. With the first stick, the vein popped because they had to pressure on his arm, so they had to stick him again, in the other hand. But that one worked and in less than a minute he was getting sweet sleep medicine pumped into his veins. About a minute later he was out, mouth wide open! The nurse hadn't wanted us to stay, he thought it would be to hard on us. Since he was in the NICCU for a month he said we'd had to see our baby get poked and prodded enough as it was in his short little life. The anesthesiologist wanted us to stay, he said he felt like it made it easier for the child. So, we stayed. And even though it was tough to watch we are glad we did stay. We had to leave him when it was time for him to go back for the scan. That was tough too but we knew he was in good hands.The nurse came out to check on us 3 times to make sure we were okay and to reassure us that everything was going well and that James was just fine. The Lord certainly blessed us yesterday with those two men who took such good care of our son. They were so attentive to our feelings and were so very gentle with James. Medical experiences can be challenging but when you have good people taking care of you, it makes the whole process so peaceful. And peace is definitely what parents need in times such as these! It took a little more than an hour from the time he went to sleep to the time he woke up. It would have taken less but they said James started to wake up during the scan so they had to give him a little more medicine which made it take a little longer for him to wake up. I've always known he was a light sleeper but honestly! It was raining so hard out side, our nurse told Jon to go get the van and pull around to the CT part of the building where there was a garage and he escorted James and I through the back part of the building to meet Jon so we wouldn't get wet. You can't ask for much more!!They told us he could have clear foods and if he could keep that down for 30 minutes then we could start on the solids. Well, he was the biggest crank pot EVER after he woke up (who can blame him?)and me and Jon were starving so we stopped at the grocery and got him some jello and juice and even though he was ticked off at the world he chowed down on that jello! We then stopped at Chick-fil-a for us and as soon as he saw those fries he went nuts. It had been almost 30 minutes since the jello so I started giving him little pieces of fries. Needless to say, he ended up eating most of mine!! He had no crazy reaction to the drugs and once we got home and he and Audrey were reunited, he was back to our sweet baby James! Like I said earlier, the day started raining and it ended raining. We let them wander out on the front porch after supper and they thoroughly enjoyed playing in the rain. Once their teeth started chattering and their lips turned blue, we took them in and gave them a bath.
We have an appointment with the neurologist next Thursday, April 9 at 3:30 to discuss the test results. That is if both tests are back by then. The MRI can take 7-10 days to get back. They also have their 18 month check up with our pediatrician on Wednesday the 8th. I am very anxious to get to talk to Dr. Walker about all of this. I hope every one has a wonderful and blessed weekend. We are going "home" tomorrow for an Easter party and to attend Cool Springs on Sunday. I can't wait!!!

Wednesday, April 1, 2009

"They should not be in here when your mother is not! Put them out! Put them out! Said the fish in the Pot.""

I leave the kitchen (5 seconds mind you) to go put something in the dryer and start hearing this funny clanging noise coming from, you guessed it, the kitchen. This is what I find when I go investigate:The tall clear container holds my sugar, normally. Here is what James and Audrey decided it needed to hold today:We have no idea what it is, what it belongs to, where it came from or why it was in the cabinet with the baking goods. Leave it to my children to find it though!Even though they can't get in the habit of putting foreign objects into mommy's kitchen containers, I couldn't do any thing but laugh and take pictures. They were having such a good time that I just let them play with it. That is, until they started licking their fingers, then the sugar box had to go!!