Operation Disinfection

My house used to be spotless. With each subsequent child I have a little less time to clean which is probably OK because I needed to loosen up on some of my OCD tendencies anyway. It still is fairly clean but certainly not what it was pre-children.

I took the kids to my friend Becky's house to swim and for a cook out on Sunday. I noticed on the way there that Carly's profile looked a little different. I couldn't put my finger on it because it was not anything drastic but I finally figured out that the area between her top lip and her nose was a bit swollen. I asked her if she knew why and she said she had run into her door. We laughed about it. She said she is clumsy and did it and it didn't really hurt so she didn't tell anybody. I felt the place and there was a knot under it that was rock hard. Then as we were swimming I noticed these nasty pustules in her ear. There was a big one that I could see well and then a bunch of smaller ones leading into the ear canal. I began to grow a little more concerned as the lip area began to swell even more.

On the way home I decided I should probably not let it go on. Acute kids and Care Now were already closed so I just took her to the ER and we were taken to the Fast Track. They said it was an ear infection, a sinus infection, and cellulitis. They gave us a boatload of medicine and we were on our way. Carly said her lip did not hurt at all and her ear only hurt a tiny bit. We went to bed and woke up on Monday and her lip looked much worse. I called the pediatrician's office and he said he wanted to see her. He took a look at her and sent us for a CT scan. It showed an abscess at the base of her nose. There was not a sore or anything visible on the outside. There was just the swelling. Our pediatrician talked to the ENT at Cook's who said it had to be drained. We got to Cook's and she ended up having surgery at about 10:00 Monday night. They made a hole up in her gum and one in her nose and drained and cleaned the area and packed it. The packing started in her mouth and came out her nose. We got to her hospital room about midnight. She did great. She slept all night and woke up smiling and denied any pain the whole time. She got several rounds of IV antibiotics and she was discharged yesterday afternoon. We had just enough time to run in Build-A-Bear (which is so strategically placed inside the hospital because who can say "No" to their sick child) before darting off to Southlake to the ENT's office for the packing removal. It was nasty. She tolerated it pretty well, probably better than I would have. We got home finally about 8:00 last night. She woke up looking almost normal this morning. The swelling has gone way down and she is able to eat most things now. She is still on 2 antibiotics (Clindamycin and Bactrim) but at least we can do them at home. She has been a trooper and I am so proud of the way she has handled all of this.

So it turns out that the nastiness in her ear and the abscess were both caused by MRSA. Nice!! So today was spent disinfecting EVERYTHING!! MRSA used to just be seen in hospitals but has become widespread in the community now. I do not know whether to take the blame on this one or not but I guess it really doesn't matter. I know that I am around MRSA all day at work and could have brought it home but I also know that I have been working around it for 8+ years now and this is the first time any of us has had it. So it could have been me or it could have been Wal-Mart or the playground at McDonald's or Chick-fil-A or anywhere else. My house is now the cleanest it has ever been and I think it will be staying this way. My OCD is back in full force. We are also doing an MRSA decolonization on each of us so every night for 7 nights we each, yes all 5 of us, get a Hibiclens bath and then twice a day we get Bactoban in our nose. Day 1 down and only 6 more to go. Oh the excitement...

Lucky #7

My Sweet Carly,

Seven years ago yesterday you were born and my life has never been the same. You are such a joy and you make me so proud. You make me want to be a better person so that you will always have the example you need. You are the best daughter, sister, cousin, and friend that anyone could ask for. You are so thoughtful and kind and not a day goes by that I do not thank God for giving you to me. I hope you had a great year and I pray you will have many, many more.

Love,

Mommy

Yesterday was Carly's 7th birthday. I cannot believe my sweet baby is already 7. How did it happen? I suppose she is a little diva because for her party she wanted to take some friends and go get manicures and pedicures and then go have lunch and cake. The girls had a great time. Everyone got in on the party fun, even Anna and Gabe.

What Anna Thinks Of Father's Day

It was a scream I hope to never hear again. It was about 3 am and the scream was piercing. I heard it and woke up and ran to check on Anna. She was sitting in the floor dazed and crying. I scooped her up and her only complaint was that her head hurt. She would not let me lay her back down so we slept for awhile in the recliner and then finally we moved back to my bed. She slept for a few hours and then woke up moaning. She wouldn't let me touch her arm and would point to her shoulder when I asked her where it hurt. She wouldn't move her left arm. I figured the arm was broken so I called Kenneth to see if he could come home and watch Gabe (because of course he was on duty- it is an unwritten thing that accidents will only happen when the spouse is on duty) while I took her to the ER. Carly had spent the night with a friend so she wasn't here. So off Anna and I went to the ER where they xrayed it and said she has a broken clavicle. They put her in a harness, wrote for some pain meds, and we were on our way. Happy Father's Day Honey- it's another medical bill to add to the pile.

We have been spending a lot of time at my friend Becky's pool lately (another plus to being in Denton). Carly is getting so brave and says she is ready to take up surfing. Gabe, on the other hand, would rather just lounge by the pool.

I may be biased but I think I have three of the most beautiful children on Earth!!

Understanding the Octomom and Other Useless Information

So on Facebook I said I would post about Anna's appointments about 3 days ago. Finally, here I am. It seems like I am running at least 3 days behind in everything these days.

Her first appointment was with the opthamologist. Much to my surprise, he said her eye was actually much better. It was looking worse to me but the measurements they took showed improvement. Her brain is still using that eye so that is good news. We are to not patch anymore for 3 months and then return to the clinic. If her eye is the same or better then we are done. If it is worse then she will need surgery because that means the patch was the only thing helping and she cannot wear a patch forever. I suppose I expected perfection from her eye and we will probably not ever get that. It still turns out frequently but she is able to correct it with a blink so they assure me that is a good sign. I do not really understand but have to trust that they know what they are doing. When it comes to eyes, I know very little.

The next appointment was for an EEG. She actually tolerated it pretty well. I took Carly with us this time and she was so good with Anna and actually seemed to help her stay calm. Anna will do anything for Carly. After the EEG we saw Dr Hernandez, the neurologist. He had not read the EEG yet so he didn't want to change her meds until he could read it. We discussed her behavior problems and he said that what I am describing is quite common in kids with CP and/or epilepsy. He referred us to a neuropsychologist for testing and recommendations about what to do. I called the intake coordinator today but was unable to reach anyone. I will start trying again on Monday. He said that the sooner we address the problems, the better off we will be. He was pretty much disgusted with the level of services Anna is receiving from the school district here. I guess I have just become somewhat complacent. I guess I need to get my "bitch suit" back out of the closet and fight for what she needs. I just know that we are in a small district that just doesn't have the resources or the volume of kids to really give Anna what she needs. And that brings me to my next topic.

Many things are making it glaringly obvious that this town is not where we need to or are supposed to be. I cannot go into all of it right now but one of the main things is the school district. I am not knocking the district. It does have its good points but it just isn't giving my kids what they need. We are looking to possibly move to Denton. They have an amazing special ed program there. It is also the town where I work which will eliminate my 45 mile (one way) commute to and from work. Kenneth would still be within his living requirement for his job. It would give me more time with the kids. There is private therapy there as well. I swore I would never move out of the country and back into the city but it looks like the time has come. All of the reasons we were staying here are pretty much gone. Please pray that once our house is on the market that it will sell quickly. It is a cute 3 bedroom/ 2 bathroom ranch style home on 5 acres. We (when I say we I really mean Kenneth) have done a lot of improvements on the land and the value of an acre has gone up quite a bit so I am hoping we can profit a little. I guess everyone hopes for that. It is not a plan set in stone just yet but probably will be soon.

My sister and her family are in town and we took the kids to NRH2O yesterday. It is a water park in North Richland Hills and I highly recommend it. It was the perfect size park with plenty to do for all sizes of children. You can bring your own food and drinks in or purchase theirs and they do not charge for parking. If you take a group of 10 or more then the tickets are only like $17. We stayed for about 5-6 hours and enjoyed every minute of it with the exception of the temporary closings of the kid area for floating turds. I do not recall as a child ever being kicked out of the kid area for a floating turd. It must be a common occurrence these days because the same thing happened when we were at a water park in Florida last summer. So my question is did kids not poop in the pool back then or were we just swimming along with the turds? Who knows. I was impressed that neither of my kids came home with a sunburn- especially Anna who is so fair complected. I, however, look like I was placed in an oven. I had started a new medicine last week and when it said on the bottle "May cause increased sun sensitivity," they were not kidding. I think this is the worst burn I have ever had.

The new medicine I started is called Plaquenil. Since I had Gabe I have been having joint pains. They have grown increasingly worse and to the point that I have difficulty even moving my toes in the morning due to pain and stiffness. I had been just taking Motrin and making it through but I just knew that this was not normal. I kept hoping it would just go away but it didn't. I finally went to the doctor. He says it is some connective tissue disease, most likely Lupus. I had a feeling this day would come due to strange lab results and some other weird things I have had in the past. He gave me the choice of Plaquenil, steroids, or both. I chose Plaquenil only. I hate steroids and will not use them until I absolutely cannot stand it anymore. He said when I get to that point to just call and he will put me on a 2 week round and see how that does. I am using more Motrin on the days I work and just trying to give the Plaquenil time to work. It can take a month or 2 to start seeing benefit from it. I hope it works. I am not happy about all of this but like I said, I was pretty sure something had been brewing for awhile.

I kept waiting for the day Gabe turned into a "bad baby" but I am finally starting to believe that day just isn't going to come. He is so sweet and is smiling and laughing all of the time. He is up to 11 pounds and I think has about 12 chins. He is sleeping consistently at least 10 hours at night. If all babies were like him then maybe I could understand the octomom. Having a baby like him is just the sweetest thing ever and I would love to always have one around. Don't fret though, this baby factory is closed for good...

What I'd Like You To Know About Us

I stumbled upon this from Bringing The Sunshine and really thought it was worth a repost! It puts into words how I feel.

Set Apart: A Primer for The Typical Folks

Unless you had the benefit of growing up with a disabled friend or family member, I bet you can relate to this scenario: you spot someone in a wheelchair, using a walker, missing a limb, or (fill in the blank). You want to be nice, so you try to make sure that you don’t give the impression that you’re staring (which often means you look away), and then you are, of course, mortified when your child points and says “What’s wrong with her?!?” You turn red from embarrassment, panicking because you don’t know what to do now, then shush your kid and give them an impromptu lesson in politeness that they almost certainly don’t understand because they didn’t think they were being rude – they were just curious. Can you relate?

Both of my children are “differently-abled.” My daughter, Sarah Kate, has cerebral palsy. Although she’s made great progress over the years, she still has a distinctive gait that isn’t “normal”. My son, Nathan, has Down syndrome. Although he has yet to miss any developmental milestones, his distinctive facial features announce to the world that he is also different. We’ve encountered a broad range of reactions from people over the years, but the scenario I described above is pretty common.

So if you’re in that situation, what should you do?

I can’t speak for all parents with special kids, but I always like it when people ask questions. It gives me a chance to advocate for my child, and educate kids on disabilities. So if you’re ever around my differently-abled kids (or others), I want you to remember something: You don’t need to feel awkward. Feel free to ask questions about my children’s conditions and the progress they’re making. If you know us, invite us to do things – we’ll let you know if we can’t. Don’t worry that you have to figure out all the details for us – we know the drill.

And while we’re on the subject, don’t look away when you see someone who is “differently-abled.” Instead, look us right in the eye and flash us a big smile. Many people don’t take the time to look at our children and see the person instead of the diagnosis. And that goes for us moms, too – people try not to look at us, either, which means that we often feel invisible, and are often lonely to boot.

Don’t look away. Smile. Ask questions.

But that’s the easy stuff. Now I want to dig a little deeper.

From my experience, and from talking with other parents of children with special needs, there are a few other things that a lot of people do and say that we aren’t so fond of. Actually, some of these we hate. Really hate. I’ve prepared a list for you of the Top 5 things I’d rather not hear.

1. “God only gives special children to special people. You must be really special.”

That’s really nice, and I appreciate the sentiment, but… What exactly makes me more special than another parent? I’m kinda lazy. I swear. Often. I avoid my daughter’s school field trips like the plague. Room mom? Never!

Everybody loves a compliment, but the truth is that I’m not special and I’m not amazing. I’m just a mom. If there is anything at all about me that is special, it’s because I was given special kids, not the other way around.

2. “You are so much stronger than me. I don’t know how you do it. I couldn’t handle it.”

Again, I realize it’s spoken with the best of intentions, but let me let you in on a little secret: when it comes to your babies, whatever it is, you handle it. The only other option is to crawl into the fetal position and pretend it’s not happening. But you can’t live that way, so you will have to eventually get up off the floor and face it, because your babies are counting on you.

3. “I’m so sorry”, or worse, The Pity Stare

Let me let you in on another secret: A lot of us special mommas actually feel sorry for parents of typical kids because they miss out on being a part of our community. When your kids achieve things, it’s not really a big deal (after that first kid, anyway). Everything’s a big deal in our house!

Yes, there are times that our life is tough. Yes, there are times we wish we were like you. But just because we have this Thing – this highly visible challenge – doesn’t mean that our lives are sad or tragic, and or that our children’s lives are sad or tragic.

The thing is, no one is perfect – we all have flaws. Throughout life, we each choose how much we will reveal our flaws to those around us. People with disabilities have awesome strengths. The main difference is that they can’t hide their weaknesses like the rest of us.

4. Critical statements about our parenting choices (includes dirty looks)

Sadly, there are a lot of less-than-stellar parents in the world. But before you make a really loud comment while standing in the line for the Pirates of the Caribbean ride about how strollers aren’t allowed, stop to think that maybe that stroller is being used as a wheelchair for a little girl who doesn’t have the stamina to stand in line for 45 minutes to see Jack Sparrow.

Occasionally, we do benefit from our specialness. But much more often, we are like salmon swimming upstream. Please don’t begrudge us the opportunity to do things that typical families do, and cut us some slack if every once in a blue moon we actually have it a touch easier than you do.

5. “That’s so retarded!” or “What a retard!”

I’m sure that many people who use the r-word probably don’t ever consider how what they are saying affects people with intellectual disabilities, their families, and friends – I get that. When questioned, people will often say “…but I didn’t mean…” and I’m sure that’s true. The bottom line, though, is that the r-word is never used to describe something or someone in a positive way. Retarded is never a compliment.

If you use the r-word, please stop. If a friend or family member uses the r-word, help them to understand why it’s hurtful.

Differently-abled children (and their parents) have dreams, just like you do. We also need friends and love, just like you do. We are more like you than we are different.

Don’t let the tiny things that distinguish us, separate us.

A Camping We Will Go (Well, Sort Of)

Carly got a tent for her birthday last summer and has been wanting to go camping since. Shortly after her birthday was when I found out I was pregnant and was not really up for camping in a tent. I felt bad about it but I just couldn't do it. So then we had Gabe and now camping out somehwere in a tent still isn't really feasible right now. It isn't fair to Carly though to not get to camp so we decided we would make it happen for her. So we set up camp...in the yard. We have 5 acres and so there is plenty of room to pretend. We set up the tent, set up a little pool, and invited the neighbors over. The kids played in the pool for hours. Then we grilled burgers. When it got dark we started a little campfire and made s'mores. After that the boys went home and myself and the girls were going to spend the night in the tent. It was so hot and humid but I had made a promise and I was going to stick to it. Lucky for me, the girls got scared and we came in about midnight. My bed had not ever felt so good! It actually was a really fun day and I'm glad we were finally able to make "camping" happen. It was also so nice to be at the house because Gabe was ok outside for a little bit but then he was ready to go inside and sleep. We were able to just take the baby moinitor outside. I won't lie, indoor plumbing was nice too!

I called the neurologist yesterday about Anna. I was hoping for a check of her Tegretol level or something simple like that. Instead, he wants another EEG. Luckily it will only be a 1 hour one but still, getting her hooked up is the bad part. I was really mad for a little bit- not at the doctor but at the seizures themselves. Then I had to remember all of the good things the seizures brought us like eating and loosing the G button and so I got over my madness pretty quickly. I guess I have a love hate relationship with the seizures. I guess it will always be that way...

Side Effexor

I can't believe it has already been another week since I wrote last. I used to write every 2-3 days but that seems as if it has become an impossible task these days. I think of so much I want to say but I just can't find the time. Carly lost another tooth today so I am awake later than usual waiting for her to go to sleep so that the tooth fairy can come. Who thought of the tooth fairy anyway? Obviously whoever it was didn't need to sleep like I do. Oh well, I may as well get over it because I still have many more teeth to go in this household.

I have been so sure Anna has not been having seizures and I have been so pleased with that. Today, Carly and Kenzie were playing at our house and they asked me why Anna doesn't blink. I was like, "what?" They said, "Yeah, a lot of times when we are playing she just stares at us and doesn't blink or anything." Grrr, sounds like seizures again. We have a neuro appointment next month so I guess we will talk about that then. I was so sure we were done with seizures. I guess I was wrong. I am not sure if they can go up on her Tegretol dose any more or if we have to add something else.

It is no secret that I have battled depression most of my life. I began medication for it in 7th grade and other than a few times when I wanted to not surrender to the pills, I have always been medicated. I had posted awhile back about how I was ready to go postal on someone at my insurance company because they refused to pay for the one drug that had ever really worked for me, Effexor XR. They would only pay for Pristiq which is the new Effexor XR. Pristiq came out about the same time that Effexor XR was going to lose its patent and go generic. Anyway, I was mad about having to switch and actually scared to death to do it because I had been so leveled out on the Effexor. But finances dictated that the switch had to be made. I had been on Pristiq for quite awhile and despite my fears, it had been a great drug. I didn't think it was any better than the Effexor but seemed to work just as well. I had a stroke of genius, or so I thought, about a month ago and decided that since switching back to the now generic Effexor XR would save about $22 a month (the insurance will cover the generic) that I should make the switch. And so I did. It wasn't until I had a crying fit the other night that I realized that the medicine was just not working. Looking back over the past month I realized I had been tired and unable to feel rested no matter how much I slept, irritable, and just overall felt like crap. I decided to go get the Pristiq filled and switch back. Voila- the sadness and fatigue disappeared almost instantly and I feel wonderful again. They say you can't put a price on happiness, but I think I can. Its $32 a month...

Still Here

Today was the Cooke County Ballet Academy's Annual Recital. This was Carly's fourth year to dance and Anna's first. Carly did jazz to "Rockin' Robin" and Anna did ballet do "Oh How I Love Jesus" and tap to "Maypole Dance." Carly did an awesome job as she always has. She loves dance and much to my surprise loves to be on stage. Anna brought me to tears, happy tears. Even though she only either moved her arms or her legs, never both at the same time, she did it. She got up there and did her best. I think it must be hard for her to coordinate all of that at the same time. I am so proud of both girls, both for different reasons.

Gabe is still the perfect baby. He is so happy most of the time. He is sleeping at least a 6 hour stretch and sometimes more. Last night he slept for 10 hours. I had worked four 12 hour shifts in a row last week and desperately needed sleep. I think he knew it because he slept so soundly. At his 2 month check up (and shots BOO) he was 10 lbs and 22 inches. He is a little chunk! I cannot believe he is already 12 weeks old now. Where does the time go?

I don't even remember if I had posted that Anna had an OT evaluation last month. She does qualify and will be getting those services hopefully in the summer and for sure next school year. She has the summer off for speech and will start up again next year. I back to considering switching districts again. I really need to pray harder about it that the right decision will just become abundantly clear. There are pros and cons to both districts and I am not sure what the right way to go is. Honestly, neither option is all that desirable but we have to deal with what is available.

We have been continuing to patch Anna's eye and for awhile I thought we were seeing some improvement but now I think maybe I was fooling myself into thinking we were seeing it. Her eye is not any better. We go back to the opthamologist next month and I feel pretty certain he will recommend surgery. I talked to a lady who didn't have the surgery for her child when he was young and he lost the vision in that eye. He wanted to go into the military and was denied due to his blindness in that eye. I do not want to put up possible roadblocks in her future just because I wanted to avoid another surgery. We will keep patching until the appointment though and maybe it will help. Doubtful, but maybe.

We also have a neurology appointment next month. It is mostly a seizure follow up which I am proud to say have been absent for quite some time. She will still need the Tegretol until she is seizure free for 2 years but that is fine by me. It seems to help her sleep better so I am in no rush to stop it. We have got to discuss with Dr. Hernandez her impulsivity though. She is hyper and that is tolerable but she seems to not be able to control her impulses most of the time. The Dr had cautioned me awhile back that this would probably be in our future. I had hoped he was wrong but I guess he wasn't. I hope it doesn't mean more medication but if it does we will cross that bridge when we get to it. Overall she is still doing so well and if these are the problems we face then I still feel like we have been blessed.

Work has been so super crazy. Usually starting mid April through about September is our slow season. It works out well because people are going on vacation and our staffing needs are lower. Not so much this year. We have a 20 bed ICU and it is staying full. I am not complaining, overtime is nice, but it is just crazy busy and I am not sure if it is going to slow down. Pretty much everybody is working overtime and some days we are still short on staff. The 4 12s in a row last week nearly killed me but it will be nice when the paycheck arrives! Since the rapture didn't happen today I guess I had better get to bed. 5am will come early and the 12 hours that follow will be long...

The PF

Happy Mother's Day. I had a great one. Although Kenneth had to work and I missed him dearly I really enjoyed my time with other family and with my precious kiddos. I am so thankful for each of them and for the way they are each so very different. I hope your day was wonderful as well.

Yesterday was the annual Preeclampsia Promise Walk. It is a huge fundraiser for the Preeclampsia Foundation. I had to miss it this year because I had to work. I don't want to miss telling others about the cause though. It is a cause that is near and dear to my heart since it has affected all 3 of my pregnancies. Please take a moment to visit the Preeclampsia Foundation and familiarize yourself with the signs and symptoms. The life you save might just be your child's or your own. Our family's story was chosen as the feature story for this month. I feel so honored to be the feature and hope that sharing our story can somehow prevent our story from ever repeating itself in someone else's family. A special thanks goes out to Nicole Purnell. She organized our local walk and has gone above and beyond for the foundation to honor her son Cooper who she lost late in her pregnancy due to this horrible disease.

I know I have been neglecting this poor blog lately. I miss it dearly. It has been like losing touch with a close friend. This is where I go to unwind and make sense of all that circulates in my head and in my heart. I promise to be back more really soon. I am really struggling to find any "me" time right now as I am still adjusting to having 3 kids. It seems like by the time I get them all to bed and get some household chores done that I am about to fall over and I barely make it to the bed. Thank God Gabe is such a good baby and is sleeping usually 6-7 hours at night. Anna is still sleeping through the night too and is now actually not wanting to get up in the mornings. It is nice. Well, I have hit that sleepy time again. It is early but I work again tomorrow and will be up early. I''ll be back...

Trio

On The Fritz

Our Internet has been on the fritz and I despise blogging from my phone so that is why it has been awhile since I've posted. I got the Internet working again yesterday but was too tired to post. I went to blog today and the blasted Internet is not working again. I guess I'll be buying a new router tomorrow. So here I am, blogging from my phone.

Anna finally had her OT evaluation through the school. The OT apologized that it took almost 6 months to get this done, she said she dropped the ball, not the school. Anyway, she scored Anna between 30-36 months. Her actual age is 42 months so I say not too bad!! She will be starting OT soon and will also get 6 weeks of it in the summer. She is still getting speech therapy as well but we will break from that for the summer.

Gabe is still the baby everyone dreams of. He is 9 weeks old now and 9 lbs 6 oz. He eats like a pig and is consistently sleeping 6 hours at night. I was not surprised to discover that he too has reflux and milk allergy- just like the girls did. Today was day one of my dairy free diet in an effort to help him out. He occasionally gets a touch of formula and we are using Alimentum. Dr. Goff started him on Zantac also. If it doesn't work we will switch to Prevacid. I do not drink cow's milk anyway but I will really miss cheese, yogurt, and most of all chocolate. I am losing weight from breastfeeding and cutting out chocolate will help me lose more so I will try to look at it from that perspective.

Now for the REALLY important news. Carly prayed a prayer of salvation and asked Jesus to come into her heart. I couldn't be more proud! She didn't want to tell us because she is afraid of being baptized, mostly it's the fear of being up in front of so many people. I reassured her that God wants her to do it when she is ready and not a moment before. I told her to take her time and we will continue to talk about it. I never expected her to make this decision at such a young age but I could not be happier. I've always said she has wisdom beyond her years- this is no different.

Ok. That is all the phone blogging I can handle for now...

Alvin, Simon, or Theodore?

I have checked our ancestry and have not been able to locate any chipmunks in the family tree. I am pretty sure that when we are not looking Gabe is taking lessons from the chipmunks on how to stash food in one's cheeks. It is so awesome to have a chunky baby. I love not worrying about his intake and not counting every calorie he takes in. If his current eating habits are any indication of the future then I suppose I better start a second job now because this kid can eat!

3 Little Monkeys

What Hope Looks Like

My girls. They are hope. 2 years ago I could not ever have imagined a night like tonight. Tonight is nothing special but at the same time it is everything special. Look at Anna. She is eating dinner. She is eating it by mouth. She is smiling about it and enjoying it and even asking for ice cream after her hamburger. She is in a leotard because she has just finished with ballet and tap for this week. Then look at Carly. She too is smiling and doesn't have a care in the world (except whether or not she is going to get ice cream). So what makes tonight so special you ask? It is special because we are finally just ordinary people going about our ordinary day. My child who was having seizures and not talking and not eating and never sleeping and having trouble walking is now eating and not seizing and even in dance. My child who was afraid of her own shadow is now looking at life in a whole new light. And then after this extraordinarily ordinary day we will go home and both girls will climb into their own beds in their own room and sleep all night long. There was a time when I couldn't see past the cerebral palsy, failure to thrive, epilepsy, g button, sleepless nights, anxiety disorder... Now when I look at these kids all I see is hope for the future because I know we can overcome anything. My prayer is that if you are now where I was then that you can look at us and know that things will eventually work themselves out and you too will one day look up and realize that you have forgotten the all the diagnoses and just become people again. This is what hope looks like...

A Slice of Heaven

Seriously, could this baby of mine be any sweeter? You should check out Pumpkin Pie Photography. Amanda is awesome! There will be more pictures to come in the following weeks.

Miracle or Mono?

I should SO be going to bed but it is so quiet in my house and I hate to waste the quiet time by doing such meaningless things as sleeping. I got to take a 2 1/2 hour nap this morning courtesy of my husband so I feel extra rejuvenated today! I have to be at the OBs office for my last appointment and to get my work release at 6:45 in the morning so staying up is probably not one of the smartest things I've done lately. After I get my release from the doctor I have to go get a release from the employee health nurse. Yes, you read right- the nurse comes after the doctor. Whatever. I'm a nurse but that is just plain stupid. The doctor says I can work but now I need a nurse's approval? I can't believe I already go back to work on Thursday. I can't believe I have been off for 6 months. I can't believe Gabe is almost 6 weeks old. Hell, I can't believe I have 3 kids. But I love my life and I love having 3 kids and now that I am getting used to it, I can't believe I ever thought 2 was enough. It has been a crazy week and I really think I need to be the star of a reality show because people just couldn't possibly write a script that would include all of the crazy crap that goes on around here...not the least of which was having my house and property surrounded by the local and state police for 12 hours the other night because some fugitive was loose in the woods on our property. Good thing my husband has just enough redneck in him- he sat out with the police on our 4 wheeler with his pistol- just in case. It was not scary but rather pretty funny. The news said that the police had him in a "contained area." I never imagined my acreage to be said contained area. As if that wasn't enough excitement for that night, Carly had to break out in some horrid rash which appears to be related to the fact that she likely has mono. The blood results aren't back yet but all signs point to mono. The pediatrician's office says that as long as she is afebrile and not sharing saliva that she can go to school. Umm, hate to upset their rules but don't you think that very line of thinking might just be how my kid caught it? Anna has slept through the night for the last 7 nights. FINALLY. Amazing is all I can really say about that. At first I considered it nothing short of miraculous. Now I am wondering if she has mono too and that is the cause of this miracle. Who cares, she slept right? Gabe had a photo shoot today with Pumpkin Pie Photography. We were so blessed to get this opportunity. Amanda, the amazing photographer, was having a mentoring session for another photographer and used Gabe as one of her babies. You should really check her work out. As if the session wasn't enough, I got to relax in her gorgeous home for 3 hours while she took care of Gabe. Heaven I tell you, heaven! I could go on forever but I really must try to get a little sleep before little man thinks it is time to eat again. Goodnight...

Daddy Would Be So Proud

He's a tummy sleeper (but only when I'm awake to watch)

My friend Rachel who pretends in public like Gabe is hers :)

A moment to blog? Is this really possible? Today has actually been a rather smooth day. Kenneth was on duty (not why the day was smooth). I got all 3 kids and myself to church today and we were even on time. After church we went to eat pizza. The kids played nicely today. I actually cooked dinner and then I put Anna to bed early because she didn't take a nap today. The baby is asleep now and Carly is watching TV. Ah, sweet peace.

Things have been going fairly smoothly still. There have been a few bumps but overall I still say adding number 3 is way easier then adding number 2. Anna has been really whiny but I think she finally figured out that Gabe is here to stay. She has also figured out that when I am nursing him that I can't really do anything else so she makes it a point to really test me when I am nursing. She breaks the rules and pushes the limits. If Kenneth is here it is OK but it is a bit tough when he is gone. I basically have to wait and discipline her when I am done and I know that isn't near as effective. I do what I can though and for now that will just have to be good enough. I know she is just trying to find her place in the family now that she isn't the baby anymore. I know that will work itself out. Someone had asked how Anna was doing otherwise and the answer is great. She is coming along nicely in speech and as not had a seizure in quite some time. She still doesn't sleep worth a crap but I am afraid that problem is here to stay. I am not sure what to do about her braces this summer. I let her not wear them yesterday and let her wear sandals while we were out at the lake for the day. Her gait was horrible and her in toeing was much worse. I want her to be able to wear sandals but the braces need socks and socks and sandals just looks stupid. I want what is best for her but I also don't want her to look ridiculous. We have an appointment with the orthotist in the morning so I will ask him for some suggestions. If anyone else has any I would love to hear them.

Carly is still being amazingly helpful with Gabe and with Anna, too. I had her IEP meeting last Monday and she is on something called a 504 now. It allows her some extra help when taking tests and she also is getting extra phonics help everyday after lunch. She is so smart and I hope she understands that needing help because of her dyslexia is in no way a reflection on her intelligence. If the 504 turns out not to be enough then she will be placed on an actual IEP but I am hoping the 504 is enough. It allows her to take any test orally if she requests it. They were going to make it where she could not fail spelling but we decided that was not a good idea because then the incentive to try would be gone. If she has a week where she studies hard and tries really hard and still fails then they will not count it but if she is just being lazy and not trying then the failing grade will stand. I think that is fair. I do want her to get help but I also want her to do her best and always know she has to try. My great aunt's husband died a week ago and Carly made her a sympathy card. It had a rainbow and a sunshine and a big heart under the rainbow. She said that it was God's promise that he would give her somebody to hug again. Wow, out of the mouth of a 6 year old. She is amazing!

Gabe is still doing great. He is getting big cheeks and I love them. I've never had a chunky baby but I think he will be one. He eats like a champ now. He takes about 2.5 ounces every 3 hours. We are still working on nursing but he is better everyday. He just gets tired still. So I still pump a lot but each day I try to actually nurse him more and pump a little less. Some days are better than others. Today has gone very well. He is definitely a breast baby though. I had a low milk supply earlier in the week (I have since fixed the issue) and tried to supplement with half breast milk and half formula. You should have seen the fit he threw and refused to eat. He clamped his jaws down and would not have it. Thank God for my sister who walked me through resolving the issue. I was so stressed that day because I was not sure how and what I was going to do to feed my baby. It was funny during church today because it was totally quiet except for the preacher preaching and all of the sudden Gabe let out the biggest wettest toot and poop ever and the guy in the pew in front of us turned around laughing and said "that was nice." I'm pretty sure everybody within a 50 foot radius heard Gabe. His father would be so proud...

A Baby, An Aquarium, and a Rockin' OB

This week has been crazy! Bringing home a new baby, a time change, and Spring Break- what am I? Superwoman? I have limited time to post so this week gets the updates bullet style.

• Gabe is doing great. He is the sweetest and calmest baby. (Which I think I deserve might I add) He is eating great. He rarely cries. But man is this kid gassy!!
• At his appointment on Friday he was up to 6 lb 6 oz. That was up 6 oz from Sunday.
• We took all 3 kids to the Dallas World Aquarium on Thursday. It is Spring Break and we felt the girls were deserving of something fun to do. It was amazing and I highly recommend it although I probably would not go during Spring Break again. The girls loved it as did Kenneth and I. Gabe slept- good thing he got in for free!
• I had my 2 week OB follow up last week. I am back on my lisinopril and my b/p is getting better. It is still not ideal but I am getting there. My OB asked what I plan to do for birth control since I cannot take the pill due to my clotting disorder. I reminded him that he was supposed to tie my tubes but didn't. He said he was well aware of that and he did not do it on purpose. He said my body could not take anything else right now and that I would be the patient to have some crazy complication. He said Kenneth must have a vasectomy. He said we absolutely cannot have any more kids (uh, no argument here) So he said to tell Kenneth that he must have a vasectomy. Kenneth agreed to it. Thanks Dr Cummings- you rock! I will probably have a hysterectomy but not for a year so something has to be done before then.
• The girls are so smitten with this little guy. And I won't lie, I am too!!

NICU Inmate #26037 Finally Escaped

It finally happened. The girls got to meet their brother and he got to come home. Yesterday was day 18 of the NICU and I am so proud to say it was our last. He did great on our "rooming in" night and passed his car seat test without any difficulties. We were home by noon yesterday. Things have gone quite well so far and although we are not far into it, I must say that the adjustment from 2 to 3 is much easier than it was from 1 to 2. I know, it's early though and that may change. The girls are crazy about their brother and fight over whose turn it is to hold him next. Carly is great about helping feed him and hold him when I need to do other things and Anna is certain she should constantly be shoving his pacifier in his mouth because he should no doubt be as crazy about his as she is about hers. Kenneth and I are doing well also. We had a "division of labor" talk before Gabe came home and it is working out well. Since Anna doesn't sleep through the night he is taking care of her at night (and Carly but she is a good sleeper) and I am taking care of Gabe since I am breastfeeding. So far so good. Gabe is eating much better and it is so nice to feed him and not feel like we are being tested at each feed like it felt in the NICU. I am tired but I have been chronically tired since Anna's birth so this is really no different than our norm. It is crazy though to have to set an alarm to wake up and feed Gabe since he rarely wakes to eat. This is so different from the girls. I like it though- no complaining here. I hope he is always as good of a sleeper as he is now. I could go on forever but I am going to take my own advice and take care of myself and go to bed while I can. Thank you again so much for all of the thoughts and prayers that have been sent up on our behalf. Miracles are still happening!

Here Comes The Sun

Ahh, we are on the home stretch! When we got to the hospital yesterday they had switched Gabe to all bottle feeds and no gavage. They left his NG tube in just in case. He did well with all his bottle feedings except 1 during the night last night. They rechecked his labs this morning and all still looks well so we are set for rooming in tonight and discharge home tomorrow morning. He still has his heart murmur but they said it is related to his pulmonary artery stenosis and that he will hopefully outgrow it by 6 months or so. They trust our pediatrician to keep up with it. He still has to do his car seat test but he has not had any lung issues since the first 2 days so I think it will go fine. Of course, as our luck would have it, Kenneth went back to work today. They are down to emergency staffing because of a horrible fire that is going on day #2 in this area. Our plan was for him to take off if we got the OK to room in tonight. Well, he can't take off now. It is OK though. The girls are going to spend the night with Kenneth's mom tonight and then he will pick them up when he gets off duty in the morning and bring them up to the hospital to meet their baby brother. It has been so weird that they have had a brother for over 2 weeks now but he has been basically non-existent in their lives. It is hard to explain. He is this little guy we talk about a lot but they really have no idea who he is. It's just weird. Anyway, they will get to meet him tomorrow morning. We are not telling them just in case something changes. I couldn't deal with disappointing them anymore in regards to Gabe. So it will all work out- just as it always does. God is always faithful and takes care of his people. I am learning day by day to praise God when the sun is shining and to also praise him in the storms. The storms always end eventually and the sun comes back out to shine...