Appointments, Appointments

So this week has been chock-full of appointments. I had to take Lukie to the pediatrician on Monday for high fever, and he came home with double ear infections. But that's better than the flu or strept like Joshua had the week before. Then on Tuesday we had to take Joshua to get a hearing check and to see the ENT because he's been having blood come out of his ear, followed be a foul odor! To come find out, his tubes were trying to expel themselves, and couldn't come all the way out. I guess it was scratching his ear drum and causing the blood and odor. He got one tube taken out and the other should be out by the end of the week. But the ear drums look good so that's a weight off my shoulders. I'm just glad he didn't inherit my ear problems. Then it was my turn for the doctor. I've been having a cold for about two weeks now and that led to an infection in my sinus'. And then yesterday we had our three month check up with the neurologist and orthopedic doctor.

So the neurologist gave us the go-ahead to start lowering the dosage of his seizure medicine. He said he wants to go extremely slow to lessen the possible side effects, but he only went down 1cc and we don't go back for three months. So at this rate, he'll be off the medicine by his 4th birthday. :) But I don't mind, I'm with him on "it's better to be safe than sorry!" He was very surprised, but pleased to see Lucas doing so well. He didn't expect him to make so much progress physically in three months, so he wants to get another EEG done to see if his brain is progressing at the same level. Great news! But then, when something goes well, something always goes wrong…The doctor told me he's closing his practice! I almost cried in his office; in fact, I did whimper and I think he thought I was nuts. :) He then proceeds to tell me that there will be another epileptic specialist coming there, but she won't be taking any pediatric patients. So then he basically tells me that he wants me to go back to our old neurologist and that he's been sending her copies of everything he's done so far. So he must've known he'd be leaving soon. It's just so frustrating because I really liked this doctor. We're still going to see him one last time before he leaves and have that EEG done with him too. I just hope that Dr. Africk takes us back and doesn't give me lip about leaving. I'm so not looking forward to this, but kind of feel like I'm stuck. I was told the waiting list to even see a new patient at Childrens is 3+ months, and that leaves Baton Rouge. Just keep those prayers coming that we transition well to new (old) doctor.

The orthopedic appointment went great. So great in fact, that we've moved from 3 month visits, to 4! They did more x-rays of his foot and hips. I know the routine, so when we got in the x-ray room, the tech looks at me and asks the routine question, "Is there any chance you could be pregnant?" But instead of asking me if I was pregnant, she asked me if there was any chance I could be drunk right now! Isn't that the funniest thing ever? I laughed the entire time we took the x-rays. The lady was so embarrassed; then she finally tells me, "I'm just excited that tomorrow is Friday!" Wonder what she's doing tonight? haha

We go to the room and the NP pulls up the x-ray of his hip and I instantly tell her how great his hips are healing. She just looks at me and smiles and says, yes they are. Then she pulls up the foot. They always say that's healing well but honestly, it just never looks right to me. So when the doctor comes in the nurse tells him she's thinking about hiring me to read x-rays now because I knew by looking at the picture that the hips were healing! :) What can I say? I'm a nerd, I love looking at the pictures. We only had one issue--that his feet are starting to turn out when he's walking now (in the walker, don't get too excited!) but the doc says that's normal in this situation and the more weight bearing he does on the feet, the more they will turn normal. I think it gives him the feeling of better balance having the feet out.

Then this morning, after breakfast my man looks like he's tired so I went lay him down. It felt like he was getting warm so I gave him some Ibuprofen. Well about an hour later, I get him up and he's burning up. I took his temperature with my neat head scanner thermometer, and it read 104.4. So I checked the other side, 105.8. I just knew it had to be wrong. So I finally got another temp and it was 102.7. My poor man, I sure hope it's just the ears and nothing else coming on. We sure don't need any hospital visits. (You see, I pressed my luck with my last entry!)

But all in all, my man is starting to get the thumbs up all around. We just have to get working on the drinking liquids and eating more solid food and snacks so we can get rid of that feeding tube. And hopefully this bug that has been everywhere lately will leave and we'll all get better. Here's to hoping next week is a bit calmer!

Love Y'all!

Here's a few pics for y'all. If you can't tell, he loves his noonie.


Today with 103 fever.. What a goofball


I can sit up, so I will


This is how I find him every morning, and every night before he falls asleep


A little QT with my brother


And this is how he acts when we're out and someone tries to give me a break. Thanks anyway Grannie! He does this with everyone Mrs. Wanda, not just at your house! :)

Still Kickin' Chicken

So just in case you're wondering we're still around. It has just been so crazy around here without Josh that I haven't a moment to myself. And on the rare occasion that I do get a break, I crash.

For those of you who are wondering, Josh is doing good in Malaysia. He's tired and oh so ready to come home, but all in all, we've all been good. All of us have been doing good, except for little Lukie…he's been doing GREAT!

So maybe I shouldn't be saying this out loud, but it seems that we've finally hit that upswing where everything finally seems to be going right. Don't get me wrong, it's not a steep incline, but it's an incline none that less. I mean, in the last eight months, we've gotten the trach out, started rolling over (constantly), he's been able to use his hands--opening, closing, grabbing items and now finally letting go!, he started weight bearing, sitting up with a little help, standing up with a little help, got the surgery to correct his foot, hasn't had a seizure in 4 months! (can I get a hallelujah!), standing in his walker and now moving forward in it….and this past weekend, for the very first time, he finally sat up on his own! And since he sat up the first time, he's a champ at it. He's even learned how to lunge forward into a diving roll and get back up into a seated position in no time at all. :) I swear, I put him in one spot, and before I know it, he's across the room.

This is huge stuff people!

He really is doing great though. And he's going to be 2 in a few weeks. It's so hard to believe. The time has really flown by. It really is crazy how time seems to be passing right before our eyes. I mean, one day, I have someone telling me that I won't be able to take my baby home, and the next it's his first birthday, then another blink of the eye and it's he's two.

Well I have so much to say, but in between helping a friend, talking to my sister in law, and putting the babies back to bed about a dozen times.. my night has come to a close. Ahh, the life of a single parent. I feel for you guys. I don't know what I'd do if I had to do this alone all the time. Don't get me wrong, three months is a long time, but it helps knowing he'll be home soon. And we're so ready.

So since it's been a while, and I haven't really posted much this time, I'll put up a few pictures from the very beginning that I've never shared with anyone before.. and the latest video of him sitting up. But just be aware, the pictures of him do not look good, and the video quality is poor. But I hope you enjoy. Thank you again for all the prayers, this is proof that God is on our side.

Love y'all!

My little NICU baby!


The calm before the storm..


Where it all went wrong.


This is right before we got the trach put.





It was truly amazing how much more alert and how better his color was the instant he got his "bling" (a.k.a. the trach).



So now that you've seen a little look into the beginning, take a look at how awesome he looks now!

It's the Holidays

Hello everyone, it's been awhile, yet again. So Thanksgiving has come and gone and it's already Christmastime. Seems like this year has flown by. Both my babies are growing up into little men right before my eyes. Joshua is getting so big. He's in school two days a week now and is learning all kinds of things. This week he went up to my mom and told her, "I work for God!" How sweet is that?? He is so good with his brother. He pushes him around in his walker and they talk all day long.

And speaking of the little brother, you almost wouldn't recognize him. He's growing like a weed. I swear he's grown another inch this month...at least!!

So, as you know, it's gotten rather cold here lately. Well, it gets cold, then warms up, gets cold, warms up...but that's Louisiana for you. Anyway, we've already gotten two infections in that darn trach hole. I'm just praying that this next cold weather snap doesn't bring another one.

Other than those two infections, Lucas has been doing VERY good! That is, except for last week when we woke up to a broken feeding tube! I almost had a nervous breakdown. Spur of the moment surgery, in the middle of winter...No thanks! We went see the surgeon early that morning and he gave me the option of putting the same tube in (which on top of being extremely painful, is the same tube that I've been having major problems with for the past 6 months) or change it to a "balloon" tube. So I opted for the different one. Well, so far, so/so... I like that this tube was a lot less painful to put in, and that I will be able to put it back in when it falls out--because I was warned--it will fall out. But, now we only have two connector tubes and our old ones don't quite work, and I usually end up getting covered in soy formula...YUK! But if that's all the problems we're having, that's fine with me. **By the way, he was able to change the tube out in the office. But he didn't use any kind of anesthesia/numbing at all. Talk about nerve wracking. He braced one hand on his sternum and pulled on the tube with his other hand. Only it didn't come out, so he yanked again, extremely hard and it finally came out. That's when I got a little queezy and not to mention dizzy. I was supposed to be watching so I knew how to put it back in, but I had to look away. The doctor had to get my attention to look at him putting the new tube in. And thank God it was not near as bad putting it back in.

Therapy is going great for us right now. Little man is starting to try and pull himself up into standing position. Of course, with support, and from an elevated position. But that's HUGE stuff for us! He's also starting to sit up a bit on his own. He sat up (with only one accident) for his Christmas pictures...which came out awesome!! He's also rolling all around, back and forth and pushing up on two's and sometimes all fours.. it won't be long before he'll all over the house and I won't be able to keep up with him. I've been putting him in the walkers more and more in the house. And at first, he started just sitting in there and playing with toys. Then it was scooting backwards. Now, he's moving all around the house. I'll walk in one room and he's there, but before I know it, he's in the next room. Then I'll walk somewhere else, and I'll find him there too. It's such a great feeling to see him everywhere! And oh my, does he love the outside!! He walks (in his walker) to the back door and just looks out the back glass. This week we had a warm enough day that I let Joshua play outside, and I took the walker and put it on the back patio. He was walking all over that patio and just laughing and smiling at Joshua. He even screamed at me and slapped me in the face when I brought him in... ahhhh.

Yes, I did say slap me in the face. That has become a little bad habit of his lately. It's partly my fault, because I hated to fuss him. But now, it hurts, and there's only so many times you can get slapped in the face before someone gets in trouble. And he throws fits like a pro! He recently started aiming his leg kicks right in my direction. It really is kinda funny, just don't tell him I said so.

Well guys, I can't make any promises, but I will try to update again soon. Hope all of you are having a great Holiday so far.


Lucas Sitting up all by Himself






Love Spending Time with my Brother

Hello, Hello Again

Sha boom, sha boom.. :)

So last week flew by. We were waiting to find out when Daddy Josh has to go back to Malaysia :( boo! But, still haven't heard. So we've been trying to do (everything) before he has to go back. Friday night, we went to Hammond to meet up with some friends for dinner. Little Lucas was a crab. Poor thing has not been taking great naps during the day, so he was pretty much ready to be in bed when we left the house. Saturday we had some adult time. Man, it was nice to get out by ourselves, but believe it or not, I really missed the kiddos. I think after so long of not being able to get a baby sitter and do anything without the kids (or getting a sitter only after they're asleep), you get used of them going everywhere with you and kinda feel lost when they're not there. Of course we had a great time, but I still missed my babies.

Yesterday we went to a cousins wedding reception. It was beautiful! And the kids were good (if you can believe it!). Joshua loves music and loves to dance, and since he found Grannie's phone and was playing games while listening to the music and dancing, he was in hog heaven! Lucas on the other hand, was not so sure about all the people. His poor little head sagged on his shoulder the entire time. I'm hoping he was just doing it because of all the people and the loud noise and that it doesn't mean he's getting sick. So, here's for hoping! Only time will tell if he gets a bug.

I thought I was getting sick, and if there's one thing I can not afford at all, it's to get sick. Especially right now. We stopped at my moms house after the reception and I literally passed out on the couch. But thank the Good Lord, today I felt perfectly fine. But Joshua's got a runny nose, and the little Lukester slept for about 3 1/2 hours this afternoon. Josh was holding him earlier tonight (and yesterday) and he instantly puts his head on Josh's shoulder. At first I thought he was just cuddling, but you really have to wonder if he's just that exhausted from being a little more active throughout the day and can't even hold his body up anymore. The therapist told me that there's no reason he shouldn't be "army crawling" at this point--but he's not even close to that. I don't know if he's just not interested or if it really wears him out to just try. I do believe the extra therapy sessions are helping a great deal, but he really only "shows off" his ability at home. And I'm so scared that when he can no longer get therapy in the home, that he'll regress. But for now, I guess it's more mom therapy sessions. He does respond well to me, so maybe if I get on the floor and crawl around like a worm, maybe he'll get the hint. LOL Can't you just picture that? Hehe..

And some great news. Lucas is finally catching on to more sign language. He pretty much understands everything I do, but he's starting to sign the following words: more, eat, all done, ball, nap/sleep, mommy, daddy and brother. I know there's more than that, but now that I've started a list, I can't think of them all. A lot of people that see me signing with him ask me if he won't be able to speak. But if you'd hear him hollering, you'd see that his vocal abilities are in tact. He's just very shy to speak. And when he starts to say something, I get so excited that I jump up and down screaming and that makes him not want to talk either. (Don't blame me, I really can't help it, you try not getting excited when your little one says his first words!) But the great thing about sign language is that he doesn't have to speak to communicate with me. It helps reduce the frustration and get his point across even when he can't say what he wants. I think it's one of the best things I've taught Lucas and would recommend this to all new parents--not just parents with special needs children. Once we get sign language down, I think we'll work on another language. Hey, what else do I have to do--it's not like I can work!

And before I go to bed, tomorrow is Baby Joshua's birthday. I can not believe he is going to be three tomorrow. The time has flown by so quickly. It seems just yesterday, Joshua was my baby! I love you my big boy and wish you a very happy birthday. I can't wait to wake you up singing your favorite song in the morning. (He's been singing the happy birthday song around the house for weeks now!!) I hope three is as good a year as two was--except for the terrible two temper tantrums! ;)

Happy Birthday to Me!

Wow! Gotta love a thing like facebook where 100 of your closest friends wish you a happy birthday! So, since I got a wealth of love today, I decided to share some with you...by updating this blog.

*Knock on Wood* Lucas has been doing Great lately--with a capital G! This week marked a HUGE milestone for us. He not only said his first word, but he said two words!! After therapy on Wednesday , he was holding a toy cow and looked at it and said, "moooo." Then, the following day, we went see the orthopedic doctor to get his foot and hips checked, and he told the nurse practitioner, "bye!" I was so super, majorly excited!! I started screaming and clapping and he just jumped back and refused to talk anymore! Go figure!! I couldn't have been more proud of my man. Is it just me, or does that deserve a surprise! :)

I have to say, I love our orthopedic doctor. Someone once told me he was as close as you can get to God fixing your feet. And I agree. Not only is Lucas' foot healing beautifully, it does not appear that he will have to have another surgery. The doctor doesn't even think he'll need to wear braces when he starts walking. And that day may be happening sooner than we think. He's started pulling himself up from an elevated seated position to standing. Of course, he can only stay up for about 30 seconds at a time on his own, and then he throws himself backwards. But for him, that's HUGE. Even when he's in his walker or exersaucer, he'll just stare at you, then stand up and give you the biggest grin. Like he knows he's doing big stuff!

And finally the bones in his hip are starting to form!! At least on one side anyways! I don't know if I told you about this, but about 6 months ago (maybe longer, time just doesn't seem the same when you stay home everyday) we had to get an ultrasound on his hips because the calcium was not forming in his sockets. Basically, once a baby starts walking/crawling and starts weight bearing on its' legs, calcium will begin to form in the "holes" which will eventually form into bone. This usually happens around 8 -12 months old. But by that age, Lucas hadn't even had any calcium show up on an x-ray. The ultrasound did show that there was some calcium deposits, but no where near the normal level. Well I guess since the little guy is moving and shaking now, he's catching up because there was significant calcium on his right side, and it appeared the bones were forming on the right! Great, GREAT news!

Two weeks ago we got to see our favorite doctor, Lucas' ENT, Dr. Rodriguez! Lucas has decided that he's attached to his trach hole and has reopened it by holding his mouth closed, then pushing air out of the hole to make squeaky noises. Sounds charming doesn't it? Well he caught the little bug that was going around and had a snotty nose and a snotty trach hole. Yes, it was disgusting! Well, as she previously mentioned to us, if the hole doesn't close on its own, she will have to close it. And yes, that will be another surgery. I told her that I wasn't looking forward to Lucas having another surgery anytime soon, especially after the LONG road to recovery we had this past time. I know it's probably for the best, but I just got my Lukie back and am not looking forward to the regression that comes with surgery. Maybe if we can eat a little bit longer and start drinking for a while, he won't stop this time? And to stop the little bit he will sit up and no more standing or rolling over, and having his head tilting constantly--No, thank you! Well, she told us that she would have to put him under and he'd have to be in the hospital for a minimum of one night because she would have to put a drain tube coming out of his neck so he wouldn't "do his trick" and "blow up his neck"--pop the stitches. BUT, she did not want to do the surgery anytime soon. We'll have to wait until after the winter because with his history, he's likely to catch something while he's in the hospital and have an extended stay. Not good!

So, I'm hoping that in the next few wintery months, he will quit being a sound effects man and let that hole close up--again! Sounds nice, but according to his pediatrician--that just ain't gonna happen. :( One can still hope though.

Exhaustion

First and foremost, we are ok. I know some of you may have been worried not hearing from me in a while, we've just been extremely busy the past two weeks. And Joshua pulling the keys off the old keyboard did nothing to motivate me to type either. But alas, I'm back to it and will try my best to let you all know what's been going on.

As most of you know, Josh left about two weeks ago for Malaysia. He will be gone for three months. Three very long months that include, his, my and Joshua's birthdays, Thanksgiving, Christmas and New Years. I know right? :( He is doing well. Didn't care for the long travel, but he's enjoying his time so far. Thank God, because when Daddy's miserable, everybody's miserable! hehe We miss him so much, and it's been very hard to communicate to him because the internet sucks where he's at. He finally bought a phone so I can actually hear him when he talks now! By the way, today's the old man's 30th birthday.. So happy birthday from the three of us. We love you and miss you!

So my man has been doing well lately. Knock on wood so I don't jinx it, but he's been doing pretty great all around. He's still eating, and loving it. Not drinking that well, but that's probably my fault for not working with him enough. He stood up (in his stander) for about 45 minutes the other day, which is by far the longest he's tolerated so far. I think he'll be trying to pull himself up to standing position soon. His legs are so strong, and he enjoys standing. If only he had better control of his upper body/torso area, I think he might be there already. But like my friend Angie said tonight, before I know it, he's going to be running everywhere and I'll be running after him to catch up. (I can't wait for that day!!)

A couple of weeks ago, Lucas had this terrible raw skin/blistering around his feeding tube. I called up Trip's mom and asked her advice for something to put on it, and she sent me a care package of awesome bandages and creams. The blister cleared up in no time. When you're in our situation--having a child with special needs--you really meet some truly amazing people. People you can call up anytime, and even though they have their own problems, they will do everything they can to help you too. I finally caught up on her blog last night, and she's been having a bit of a rough time lately. So please, say an extra prayer for them when you read this.

Last week, I finally got the test results from the sleep study. It's only been like two months or so, and the nurse never even called me with the appointment. In fact, if I wouldn't have answered the phone for the appointment reminder service the Saturday before, I would never have known about the appointment. That is so extremely frustrating. And to top it off, the test didn't really show anything. Go freakin' figure. He told me the morning after the sleep study that the seizures were coming from the right side, but when I went to his office he said they were from the left. (I'm pretty sure the right side was the right side ;) because he didn't have the paper in front of him at the office to verify. And I was watching him read the EEG at the hospital) He also said that the seizures were not coming from one specific point in the brain, but from many different areas. It would start at one point (on the right side) then spread over the entire brain, and then fade out in the place it started. For example, one started in the front right side of the brain. As it continued, it then covered the entire right brain, and at the height of the seizure, covered the entire brain. As the seizure faded out, the left side "dimmed" first, then the right back until finally the place where it originated was gone. The second seizure recorded started in the back right brain. He also told me that he thought if he would've caught another seizure on the EEG, that it would've probably began in a different place than the first two.

This is not necessarily a good or bad thing. But, it does mean that they still don't know what was causing the cluster of seizures he was having. And we'll probably never know. UGHH He was very surprised that the seizures stopped on their own, being that we didn't change the medicine from the time of the seizures until it stopped. So obviously the medicine he's been on is not/was not controlling his seizures--at least not the breakthrough ones. After some research, I found that even though a child's medicine may stop the seizures while he's awake, sometimes he can still have seizures when they sleep, or during a certain period (maybe overexertion from therapy, when they're sick and the immune system's low, etc.) and these are what are considered breakthrough seizures. The doctor did tell me that when we go back in three months, if Lucas still hasn't had any more seizures he's probably going to start backing him off his medicine. I don't know if I'm ready for that.. The other doctor told me that he had to be seizure free for at least a year before they'd even consider backing him down.. It just makes me nervous thinking about this. But I guess I'll worry about that more in three months.

Well guys, before I make this entry way too long, I'll cut it out for the night. Besides, I'm so tired and Joshua will be up very early in the morning--even though he's not asleep yet. That boy just does not stop. From the time he wakes up, until the time he goes to sleep, it's GO GO GO. Now you know why this is titled "Exhaustion" :)

Love y'all!

Bittersweet

While a lot of awesome things have been happening in our house this last week, we were extremely saddened with some devastating news on Sunday. A dear friend of ours' little boy fell into a neighbors pool that morning. Since then, little Cooper Aucoin has been fighting for his life at Our Lady of the Lake Hospital. Please keep Cooper in your thoughts and prayers, as we all know the power of prayer has brought Lucas back to us, and it can also bring Cooper back to his parents.

So now for our awesome news...LUCAS IS EATING! That's right. About a week ago, he starting eating a little here and there, and since then, he's just taken off. He loves to eat. He eats a full jar of #2 for breakfast and lunch, and (2) jars for dinner. That's right, and his dinner is now at 4:30. Unless you want to hear him scream for 2 hours. And please don't think you can sit down at the table and NOT feed him! He's contorting his body toward the back of the chair looking for the jar of food. But I'm not complaining. I've been waiting for this day for a long time. But I'm not used to him eating so much. I went to the store today and bought about $30 worth of baby food. So what, that might last us a week now? Guess we'll see. :)

Lucas is also doing awesome in therapy. He even did great today when we went to Metairie. He's not quite used to the stander yet though. After about five minutes or so of straight standing, he's looking around for me, and when his eyes find mine, the screaming begins. I don't think he's hurting, he's just not used to all the weight bearing on his joints. He's been in the chair for about 30 minutes every day this week. (Except today, I was bad and didn't put him in..shame shame.) And it's already helping, because he actually pulled up on a toy to stand on Tuesday--with the therapist, not on his own, but he still gets all the credit!

His legs are getting so strong! And he's doing better building up his upper body strength. Today the therapist mentioned that he doesn't have "the fat hand" anymore. From not using his left side--especially his left arm/hand--his left arm was about twice the size of his right. It was puffy, almost looked like it had fluid around it or was swollen. But I actually think the arm was just fatter from not using it. Well now, both of his arms are skinny. It's so cute, but it's missing muscles. (No, not literally.) You can actually feel the weakness of his muscles if you touch it--hell you can see it if he's wearing a sleeveless shirt. But darn, it's the cutest weakest muscles you'll ever see! ;)

His weak muscles are making mine some strong. It's like carrying a bag of flour taped around one of your arms all day long. Today I had to pick up Joshua from preschool and couldn't get the stroller out of the back of the car. So I had to hold Lucas all the way from the car, to pick up Joshua, and walk back to the car with one arm. I felt like the muscles in my arm were just tearing away. It may not seem like much, but by the time I hold Lucas, Joshua's nap sack and hold Joshua's hand (dragging him to the car), and whatever else I need, it feels like I'm holding him forever!

And to top off our awesome week...Since Lucas is getting stronger and eating, he's also finding his voice. Which is both good and bad. Good because he's starting to try and mimic sounds and tones, but bad because he screams SO darn much. But it's mostly good. Joshua and Lucas are really bonding now. Joshua says.. "Gimme a kiss!" to Lucas just like I tell it to him. One of our friends gave us a walker, and while Lucas sits in the walker, Joshua stands in front of him showing him how to play with the toys. They have their own language. It's really exciting. I can't wait to see them continue to bond. Pretty soon they're gonna be plotting against me.

So on that note...I'm off to bed. Hope you're having as awesome a week as us.


Dear God, please protect my friend Cooper Aucoin. Please send him a miracle like you did for me. Help him to make a full recovery so he can live the rest of his life proclaiming your good works and your great name. Give him strength to keep fighting. Please Lord, take away his pain like you did for me. Give his parents the strength to keep fighting with him. Let them know that even though this is hard for them too, their reward will be great. And they will spend their days together, with each other and with You. Amen. Your miracle baby, Lucas