Happy Monday!

Putting the coins from our garage sale into her piggy bank!

Say Cheese!

Bubba's flowers.

Playing outside...in her elmo dress!


All is well in the Kahl house!!! I am feeling 100% better and we spent a beautiful weekend together enjoying the weather and each other! Yesterday was one of the best days we have had in a long while. We decided that Ellie and I were well enough to go back to church, so for the first time in weeks we headed out...a little late...but, better late than never! The service was beautiful and Ellie was PERFECT the entire time. Every time I leave our church I am reminded of the reason we love it there so much. It puts a smile in my heart and it changes me for the week. I forget all of the burdens and pains and for one whole hour I am only reflecting on my relationship with God and the miracles He blesses me with daily. I love it...it is such a vacation for me! After church we headed off to HEB. B was going to grill steaks for dinner and we had to get some beautiful new flowers for Bennett. We got through the whole store and Ellie said, "Flowers, there for Bubba. Those are Bubba's flowers!" So sweet!

It was a beautiful day outside, so we rested next to Bennett for a while. There was a young family that just buried their baby boy and we could tell they were heavy with grief. Ellie was acting a little like a toddler toward the end of our visit, so when she got loud and started running away from us we knew it was time to go! While we were there Ellie had one of the cutest conversations. It went like this:

Ellie: Where's Bubba?
Mommy: Bubba's in Heaven.
Ellie: Oh, Bubba's playing hide and seek. (yelling) Where are you Bubba? (covering her eyes with her hands)

It breaks my heart when she does stuff like that. Yes, she should be playing hide and seek with her bubba...but, not pretending to do so at his graveside. However, I am so grateful that she loves to go to visit Bennett and she seems to have such a connection to him. She is going to make such a great big sister some day!

Team Chunky Monkey update:
Only 27 days left until the event! That's not much time friends...

I have to share this wonderful news. Yesterday, I opened a packet we received from March of Dimes while we were sitting outside. There was a magazine included for the Houston area MOD and on the first page they had the top 15 family teams from 2008. Guess who was #14 on that list...TEAM CHUNKY MONKEY!!!!! What an honor! We raised a little over $3700 last year and made the #14 team in the city of Houston b/c of all of your generosity. (I have to tell you that our friends from team So Lil were the #15 team! Their twin girls were born at 23 weeks and their precious Lily was Bennett's neighbor. Lily and Bennett are in Heaven together and Sophia and Ellie will share a special bond forever...along with curly hair!)

We would LOVE to make the top family teams list for 2009, but we desperately need your help to get there. Please forward our blog page to all of your friends and family in order to help out the tiny miracles God has planned that will benefit from the research MOD performs. We are so thankful for all of your support!

The crawfish boil is all set to go for April 11th at the Waterview Estates Clubhouse. We are looking forward to having all of you there, so don't forget to email me with the number of people in your party ~ we want to make sure we have enough mud bugs for everyone!

Blessings,
Angie

SOS

…_ _ _... The universal signal for distress…

This is it…the white flag it out, my arms are up and I surrender.

The last week has been interesting. Then again most of our weeks are interesting. None the less, this one takes the cake.

Wednesday we saw a slight improvement in Ellie’s case of chickenpox. I never really saw them as a threat, however with our luck you just never know what will happen! On Thursday I happened to notice that Ellie was getting a few more “pock marks” which didn’t seem “normal” to me b/c it had been almost an entire week after her diagnosis. I called the doctor (b/c I just couldn’t let a week pass without seeming desperate and neurotic to him) and he was also a little concerned. He said that with her atypical presentation of the virus she should NOT be breaking out with any new marks. His instructions were to keep watch over her and let him know on Monday if she got progressively worse. OOOHHHH…you mean a whole week of house arrest and I thought we were in the clear and now I might have to worry myself through the weekend with every red spot that pops up on her body. I am just not sure how much more I can take…little did I know!

Friday I was a nervous wreck! I even called my poor neighbor over to play doctor and give me her opinion on Ellie’s condition. She has kids, so I trusted her opinion…she said to just relax. Ellie looked fine and the rash was minor. So I took her advice and relaxed! Saturday the whole family slept in! When we finally woke up we all ate together at the table and talked about what we were going to do. B didn’t mention having to do work (for the first time in weeks…so, I took advantage of the family time). We decided to buy a new grill and have a good old fashioned family day barbequing and playing outside in the beautiful weather. We went shopping together and got a pretty cool BBQ/smoker for my chef to practice his “Bobby Flay” skills on. Uncle Chris, Uncle Dave and Aunt Katie came over and we just relaxed for hours together cooking, playing and eating!!! It was awesome. That evening Ellie was a little cranky and I was a little worn out from being On Call all week. As the evening wore on I started to feel a little under the weather. After all of our family left I was on the couch shaking with the chills. It was so bad that I had to bite the inside of my cheeks to keep my teeth from chattering together. I asked B to bring the trash can (yuck…I know) with the hopes it was just to be safe and not sorry. Turns out I would have been pretty sorry if he hadn’t put it next to me. An hour later I was horribly sick…I mean so sick I wanted to call 911. I woke B up (he was in our bed with Ellie and I was still on the couch) and asked him to help me change the bag and get some medicine. By now, most of you know about B’s sleeping issues. Once he is tired…THAT’S IT! There is no turning back for him and bless his little heart he is just useless. So, I called my mom at 1:30 to ask her what I should do. She thought maybe I had contracted shingles from Ellie’s chickenpox virus and that I needed to get to the hospital…ugh. What was I supposed to do? We couldn’t bring Ellie to the hospital and there was NO WAY that I could drive myself to the hospital. I am sure one of our neighbors would have taken me, but I decided to just wait a few hours to call my brother. At 5am I couldn’t wait any longer. I was sure I was near death and I had to get to the hospital as soon as humanly possible. I mustered up the strength to literally crawl into our bathroom shower and use a little soap to freshen up…a mix of BBQ smoke and vomit was probably not going to make a great first impression on any nurse! I got back into my pj’s and Uncle Dave was there to drive me to the hospital. God bless Dave for answering his phone at 6am on Sunday! We got to the hospital and I was admitted and put into a room rather quickly. In no time they were taking blood and because of an elevated heart rate they were inserting an IV for some medicine and fluids. Now, I have never been to the ER…ever! They only time I have had IV fluids is when I gave birth and I would have been perfectly happy keeping it that way. I HATE needles…but, I didn’t even put up a fight when she put the IV in. I was miserable. I couldn’t manage to keep my eyes open after the meds hit my system and poor Dave had to sit there and watch me sleep until my mom could get to our house to watch Ellie, so that B could drive to the hospital. What a nightmare! I was scared to death of my mom watching Ellie b/c she has CML. It is a rare form of leukemia and she has to take Interferon daily as a form of Chemotherapy to keep her cancer under control. The last thing she needed to do was go into my obviously contaminated house and watch my baby who was getting over the chickenpox! She wouldn’t hear any different and was at our house by 8:30am…what a family I have.

B got to the hospital and Dave finally got to go home and get some sleep. You should have seen the look on the doctors face when he came in the second time…he said to Brandon, “You changed…” and then he looked at me in a very confused manner. We laughed and explained that Dave was my little brother…blah blah blah.

Anyway, after a few bags of IV fluids my heart rate was still elevated. All of the tests came back normal, so there was no flu or shingles to worry about. I decided that rather than sitting through another bag of IV fluids I would rather be at home with a ton of water and my baby girl. They discharged me and we were on our way. I was certain that I only had a 24 hour bug and I would be better in no time…and here we are on Tuesday evening…not a whole lot of progress.

I love my job. I love being here with Ellie...doing the dishes, cleaning the kitchen, keeping the living room clean, being a stay at home mom…BUT, when the mom is sick there is NO ONE left to help! I was so sick still on Monday that I begged my poor mom to come back out and help me. She did and she even made homemade chicken noodle soup for me (not that I could eat). I decided that today had to be better than yesterday, but mind over matter just isn’t working for me this time around. I was feeling better in the head ache department, but other parts were not doing well at all today. I am SURE that I will feel better tomorrow. I don’t think Ellie can take one more day of me sitting in the couch replaying Mickey Mouse Clubhouse for her for the 100th time while she has to entertain herself. To top it all off, sometime this weekend Ellie got a terrible diaper rash and for the last two days I have had to let her run around with no panties on just so it could heal. So, B came home to a worthless wife yesterday and a ½ dressed baby girl with a toddler potty in the middle of the living room…did he hit the jackpot or what!

Basically, this post has drained the reserve energy that my couch has been saving up, so I’m off to rest. I’ll keep up the update posts with hopes that great news is on the horizon!

Blessings,
Angie

Happy St. Patty's Day!

Notice the sign...story of our lives!


I so wanted to do "Not me Monday" guess it's too late for that now!

Our little chicken is chugging right along. She has never really acted sick (just a low grade fever), but that is not uncommon for her. She has a very mild case of the chickenpox and we are so thankful for that. She still has a few papules on her tummy and a few in her diaper area, but for the most part she looks great. We are on house arrest for the rest of the week, which is fine with me as long as the weather is nice enough for us to play outside. I thought it was going to be 82 and sunny today and I woke up to clouds and misty rain...work with me here Mother Nature!

We had a bit of an issue yesterday with out beloved rice(sand) and water table...errrr...it seems that rice and humidity do not go well together. Word of advice for all of you creative moms out there: In lieu of sand, DO NOT use rice if you live in a humid climate! We had MILLIONS of gnats fly out of that thing yesterday...disgusting. B came home from work and played pest control man and sanitizer to get the table up and running for today. I have decided to just make one side a water table and the other side will be for "fun play." Today we are going to use shaving cream on the other side. I thought about letting her play with play dough on that side too...any thoughts out there on what else we could do? Jenn...I know you have a million cute ideas for me! Other than that we still love our little investment!

St. Patty's Day snuck up on me. I used to love going out to the little Irish pubs on this day...my how things change once you have kids! So, my mission today is to get a great Irish recipe and test it out in the kitchen. I have never tried Guinness stew, so that is a front runner right now.

Team Chunky Monkey update: I am getting a little worried that our BIG team has turned into a much smaller one this year. Maybe some of you have just been putting off signing up (or donating) because you are like me and you do everything last minute...it's getting pretty close to last minute! We have 41 days left to make a difference. We have collected a total of $1260, which means we have $1740 left. YIKES! We really need your help here. We have booked the clubhouse for April 11th ~ our annual crawfish party. This party started as a birthday celebration years ago for my brother and me, but has turned into a "thank you" for our TCM members. We really hope to see all of you there, so make plans now! Brandon will start cooking early, so I am thinking the party will start around 2pm. I will confirm that time after I check with the chef! I am hoping to have our shirts in by then, so all of you that donated can pick them up then. Also, I am going to have our team poster there for all of you to sign. A great turnout for these two events means the WORLD to us. Thanks for all of your continued love and support!

Blessings,
Angie

Chicken….WHAT!!!

Oh, what a long day it was yesterday…L.O.N.G.!!! I got up early in order to complete an order before Ellie got up. I was rushing around because I needed to be out of the house by 11am. As I walked over to Ellie (who was playing in the bath) I noticed a tell tale red bump under her arm. Frantically, I started searching all over her body for more of the tell tale red bumps…better known as CHICKENPOX! Sure enough, there were several and most of them were on her trunk near her “hot spot” areas. Obviously, I called the doctor right away and we had an appointment at 2. It’s a good thing I left the house a little early b/c my car was in desperate need of an oil change. Brandon has been reminding me to get it done for weeks now…so, when the light came on in my car yesterday I knew I better stop asap! I did and I told the man working there that I needed to get in and out b/c my daughter had a doctor appointment in exactly 1 hour…time was ticking.

As I am sitting there trying to silently isolate my daughter from everyone’s air space a young couple sits down on the couch across from me. They are young…really young. They were both reading books, so I glanced up to see what stellar novel he was reading, when I noticed the title, “Marijuana Horticulture!” WHAT!!! SERIOUSLY!!! He was totally reading a book about growing and maintaining a little Mary Jane…unbelievable! The best is what his significant other was reading…”What to expect when you’re expecting!” I WISH I was kidding…what a match made in Heaven…right! Only in my world…(and yes, I was sitting a significant distance from them in order to keep Ellie away);

We were in and out in no time and off to the doctor. We got right in b/c apparently chickenpox is VERY contagious…and indeed we are blessed enough to be in the >10% of kids that actually get the disease AFTER being vaccinated…when will I convince myself to start buying lottery tickets? He said that it looks like she will just have a mild case, however she is contagious for at least 7 days, so she has to be quarantined until next Friday. Please pray for some very nice weather!!! When we were leaving he told me that he had received the letter from the orthopedic doctor with his opinion of our meeting on Monday. My doctor said he thought she looked pretty good, but he did suspect (insert multisyllabic medical term here). I asked what that meant and he said, “Well, it means that there is probably some nerve damage that occurred in the brain…..” I stopped him there and said, “Oh, are we talking about mild CP?” When he shook his head yes, I just shrugged my shoulders and said that is exactly he told me…no new surprises there.

So, I took my infected little chicken and we headed off to the HEB to get aveno bath, oatmeal bath and all of the other chickenpox goodies we might need in order to survive house arrest for the next week. I have to be honest…we also stopped at Hobby Lobby b/c I needed to get a few things for work. We were in and out in a jiffy. However, while we were in there I heard my keys fall to the floor. I picked them up and kept pushing the cart b/c I was trying to get out as quickly as possible.

Finally, we were heading back home. It was totally freezing on Friday and raining and the last thing I even wanted to do was leave the house! We pulled in to the driveway 10 minutes later. I grabbed our bags and got the keys out of the ignition. When I got to my front door I realized that I was missing my house key…aaaaahhhhhhhhhhhhhhh!!!!! It had to have fallen off in Hobby Lobby when my keys hit the floor. How irritating!!! I called my husband ~ who was busy as usual and there was no way he could head home at that point. So, I got my daughters gift card from BuildABear and slammed it in the crack on our front door. After about 5 minutes of breaking and entering I actually got the door open!!! Hallelujah ~ and how frightening all at the same time! No time to be irritated b/c I had to get my screaming toddler out of the car. I threw the bags in the front door pulled it behind me (in order to keep the dogs out of the rain) and…well, you know what happens next…THE DOOR CLOSED…AND IT WAS LOCKED!!! Now I am totally near a nervous breakdown. I am tired. Ellie is screaming and shivering and sick. My dogs are howling inside and I literally want to sit down and cry. I reach out to our neighbors and they come to our rescue. Finally, we were able to jimmy a flat head screwdriver onto the lock and pop the door open. The first thing I did was unlock the bottom lock! One more crisis under control in the Kahl household.

I picked up the house phone to call Brandon and tell him we were in and…no dial tone! What a joke. I call B from my cell and he makes a call to the cable company who tells him that there is an outage in our area. Okay…we’ll wait. Four hours later the cable is still out and now they are saying there was never an outage in our area…interesting. The housekeeper was here today, so B is on a mission to try and figure out what they messed up…it was the GFCI breaker in our bathroom had to be reset and voila! It came right on! So, at 8:30 we were all in bed fast asleep! Well most of us anyway…

Today was Dave (my little brother) and Katie’s engagement party. It was devastating to have to miss such a monumental occasion in their lives. But our little chicken needed us to be with her and cater to her needs right now. The weather is still crummy and B and I were just hanging out in the living room watching The Food Network. It was one of those days that everything that comes across the screen looks good enough to eat. So, we decided to have Super Saturday Cookoff. WOW!! We had some fabulous food! To start, I made this wonderful spinach and artichoke dip. For our lunch/dinner B made FANTASTIC baked potato soup…yummy!! For desert we had strawberry cake balls ~ holy goodness!!!(The recipe is at the bottom of the linked page) Tomorrow chef B is preparing his brother’s famous red beans and rice with jalapeno cheese cornbread. It is so amazing to have a man that can make such fabulous meals for us to enjoy. I LOVE to cook, but sometimes it is so nice to eat a yummy meal you didn’t have to prepare. I am pretty sure between Chris and B, they could start their own restaurant…The Kahl Kafe. 

So, one oatmeal bath down and we’re all tucked in bed together. We are sure Ellie will come through this little virus with flying colors. However, we would appreciate all of your prayers for her healing. I am starting to think that the second half of 2009 is going to be pretty awesome for us since the first half has started out so challenging…here’s hoping anyway!

Blessings,
Angie

Relief into reflection

I was so relieved to get the news that the orthopedic doctor thought that Ellie has a very mild case of cerebral palsy that I all I could concentrate on for three days was the relief I felt! However, yesterday the relief turned into reflection (okay, obsession) and I had to do a little research.

The doctor suggested that we DO NOT label Ellie right now with cerebral palsy (and maybe not ever depending on how she developes). The ex-teacher in me started to think about whether or not that was the best decision for her. She obviously doesn’t need PT right now because developmentally she is still on target (with exception of her irregular gait). So, if we don’t need PT there really isn’t a reason to label her.

Then there is the little issue we have about learning her colors. Ellie has always been ahead of the game verbally (I think…not as a mom, but as a teacher). She can count to 26, she knows her ABC’s, she talks in very complete sentences, but she can not learn her colors. No matter what I try it is as if she can’t process that information…and believe me I have tried EVERYTHING! When a child that can learn everything else so easily, but can’t grasp a simple concept like colors it is a red flag in my mind.

So, the balance and coordination because of the CP combined with the trouble grasping the concept of colors got me all fired up. I started to question our decision. After a lot of research I decided that 2 ½ is young, but not an excuse to sit around and hope that she will just “get it” one day and we can all relax. I am a proactive person (which is my excuse for not being patient!). So, I found a gymnastics academy that offers private lessons. I figure if we can get Ellie involved in a physical activity that lends itself to helping her balance and coordination that would give her an advantage. However, the mommy and me or organized classes aren’t one on one which is what I think she needs in order to learn properly in the beginning. I am hoping they will be able to accommodate our request and Ellie can once again start gymnastics.

The second part of my “solution” involves something Brandon and I have thought a lot about for a long time. Home schooling. Most of my teacher friends are cringing…I mean public education is here for a reason right…not when it’s your child that doesn’t fit the mold! I am looking into the preschool home school curriculums right now and Ellie and I will begin as soon as I can make a decision. Home schooling has come so far. It’s not your “denim jumper mom and kids stuck at the kitchen table all day” kind of situation anymore. There are so many groups in our area and field trips and individualized learning…what more could you ask for? I think part of my confidence comes from loving to teach. I feel like I was really good at it and I loved it, and I know I will love teaching Ellie even more. (I felt like I should clarify this a little...we have only talked about the home schooling concept for the next few years. Obviously, there will be a point we reach where I won't be as effective as maybe public or private school...we know we have other options out there when we get to that point.)

Now, where does another baby fit into this plan? Truthfully, it will be difficult. Can it work? I am sure it can. We have decided to go ahead with one more IVF (because I am very confident that we will be using our embryos we already have…I really don’t think B has a CF mutation…just a feeling). If we don’t get pregnant it will be tough. I am sure I will grieve. However, I feel so blessed to have the chance to be here with Ellie helping her. There are so many parents in our situation with children that might need a little extra help and they don’t have the opportunity to stay at home. So, our blessing is that I can and I love it!

I was wondering if any of you out there home school or have friends that home school? I have done research and I know of a few books to start reading, but I am looking for ideas about different curriculums and hints in general. Any help would be greatly appreciated!

Can I just tell you how exhausting it is to think that much all the time? I have been thinking about all of that stuff for the last two days. I woke up yesterday before 8am and started my research. It’s like my brain never shuts off. I have been so completely exhausted for days now. I mean EXHAUSTED! I feel like I could fall asleep driving (I wouldn’t), but you know that kind of tired. Then I lay down in bed and my brain holds me hostage and won’t allow me to sleep. At 8pm last night I could have fallen dead asleep in the living room. At midnight I was still watching TLC and bravo in our bedroom. Then I wake up and start all over again. I have forgotten through this whole issue that my body needs to be taken care of, too. I still have to go in for my CT and Brandon still has to have his blood redrawn for the Ambry test (don’t even ask). Neither of our lives have allowed for any “take care of us” time.

As unconventional and crazy as our world has been, the last few days have been so much fun with Ellie. I have a great tan because of her new sand and water table. It was 85 degrees on Monday and we were both in our bathing suits playing outside (in the back of course b/c it would be illegal to have this body in a bathing suit in public!). Nothing like a bathing suit to remind you of the 10 pounds you HAVE TO LOSE before you actually go to the swimming pool! Short of starving myself I don’t know how I can get it off. I am convinced that the breastfeeding is what helped me lose so much weight last year…that was the easiest diet ever! On Tuesday, I took Ellie back to the livestock show and we visited all of the animals again and Ellie got to eat her favorite food: roasted corn. It was our third time back and we are officially not going back until next year! As much as our child loves animals I have a feeling our pass to the zoo will be very useful this year. Yesterday, we ran errands and I did laundry. I was going to take a picture of all the clothes I folded, but it was way to embarrassing! I HATE to do laundry. Brandon likes it (or at least I have convinced myself that he likes it), but he just doesn’t have time for that right now. So, I took one for the team and started folding yesterday…FOR AN ENTIRE HOUR! It doesn’t help that our dryer is definitely on its last leg…we have got to get a new one. Except our microwave gave out last week and we need one of those first (a necessity when you have a little one that loves hotdogs for lunch). It seriously takes me 2 hours to do one load of clothes b/c I have to dry everything twice…oh…the joy of laundry.

Today it is freezing outside. We are running one errand and then I have a little work to get done and 4 loads of laundry of course! Stay tuned for a new slideshow I will have up today.

Blessings,
Angie

UPDATE on Team Chunky Monkey:
The amount of money that the March of Dimes has raised so far this year is down (not surprising b/c of the economy), but the number of premature babies born is rising. We only have 45 days left.
We have raised $1185 total from our generous family and friends. All of you are doing AWESOME on your fundraising! We have one person that is in the lead right now with a total of $225 donated...KEEP IT UP!
I did get in contact with the MOD and they have fixed our team site. Team Chunky Monkey is up and running and I can see you if you signed up on our team. Log on today and make sure you sign up to walk with us on April 26th ~ it is the best birthday gift you could ever give me! I will post the proof of the shirt as soon as I get it done! We can't thank you enough for helping us honor Bennett's life and celebrate Ellie's again this year!

I must go through the valley

To stand upon the mountain of God

I love this Third Day song…and I heard it this morning on my way to the doctor’s office with Miss Ellie. I was nervous, but I kept repeating the chorus in my head b/c it just seems that we have been in this valley for so long now…but, the truth is we will stand upon the mountain of God again.

The day started E.A.R.L.Y!!! For those of you that don’t know, Ellie usually sleeps in until about 10:30. This gives me the chance to sleep rather late and get up before her to get things done. I love to have my coffee in peace and quiet right after I finish cleaning the kitchen in the morning. Weird, I know. So, B woke me up at 6am in order to get my routine done and get ready for the doctor in time (I didn’t really sleep last night anyway and B had the alarm set for 3:30am to get work done…WHAT!). Anyway, I got in and out of the shower by 6:45 and had to start trying to wake Ellie up. I whispered in her ear, “Ellie, do you want to go swimming in mommy’s bath tub?” She was so cute. She barely opened her eyes and said, “Shwimming, okay.”

I usually run late everywhere I go. Not this morning! We were out of the house by 8am and though McDonald’s and at the doctor by 8:20. I was even impressed with myself. Long story short…we got in early to see the doctor. He was awesome!!! I would recommend Dr. Davino to anyone who needs an orthopedic doctor. He was so knowledgeable about preemies and studies that are going on at different hospitals. He knew every single one of Bennett and Ellie’s doctors they had in the NICU, as well. I felt instantly comfortable with him and I trusted him to “give it to me straight.” He performed a series of little tests on Ellie. He made her walk for him, sit “criss, cross applesauce” and then return to a standing position. He checked her feet, legs, hips and spine. He was impressed with the way she has developed in spite of the fact she was born so prematurely. Then he said, “You know, 1 in 3 preemies is born with mild cerebral palsy and right now there is a study being done through TCH that has found mild CP in about 50% of preemie multiples.”

Most of you know how anal I am by now. So, you are probably thinking that I was freaking out…well; you’ll be pleasantly surprised to know that I wasn’t! I read about this last week and I was pretty well ready for us to have this discussion. To be perfectly honest I was a little relieved. I have been so scared to death about what could be wrong with her that to find out it is probably something so mild was like a weight lifted off of my heart. He said that if she were his child, he wouldn’t do anything further at this point. If she does have mild CP it is just that…MILD. There would be no point in labeling her right now b/c she isn’t having any developmental issues related to it. It is not progressive and there is basically no way to treat (very) mild CP. We could go in to neruo and have MRI’s and CT’s done, but he didn’t see the point right now. He suggested that if the trend continues that down the road we might consider having her checked. He said that braces and special shoes wouldn’t do anything for her, so basically we just need to sit tight for now. FINE WITH ME!!! What a total relief. I would have skipped out of there, but that might have looked a little strange!

So, we were back home and in our play clothes by 10:00am! B went on a “daddy mission” this weekend to find the Step 2 naturally playful sand and water table for his little Ellie Grace. Seriously, he spent Saturday and Sunday traveling around Houston to different stores trying to find it. He was finally successful yesterday and got it home and put up by 1 in the afternoon. We spent HOURS outside yesterday playing in water and digging for treasures. We actually got a nice tan. So, today I put on my bathing suit and we were out there for 3 hours playing before we had lunch and then Ellie fell asleep! For all of you parents out there…this is one of the BEST toys we have ever had. It is not only fun, but you can make it so educational and it exposes the kids to different textures as well. Instead of sand we used rice and B buried “treasures” in it for Ellie to dig up. It is an amazing toy and the last two days have been just awesome watching Ellie play with it.

So, maybe we made it to the top of a mountain today. I don’t know how long we’ll be here, but we are here today and that is an awesome feeling! I hope you are all standing on top of your mountain today!

Happy Monday!
Angie

Picture perfect!

Happy Saturday!
Barbie Style Cowgirl!!

Pure Joy!

Catch!

Do I make the most of it?

Well, we didn’t get the answer we were praying for at the doctor’s office yesterday. He said that her, “Gait is not a normal gait.” Am I surprised? No. Does that make it any easier to deal with? No. He said that getting into neurology is going to take forever. He feels like we don’t have to jump right into that, but would rather start with an orthopedic specialist. I didn’t really ask many questions b/c he as in a rush, we didn’t have an actual appointment and basically, I just couldn’t think on my toes. As a mom, I feel like we should start at the worst case scenario and work back towards the less severe issues. But, that is not the way we are working this one apparently. I am so scared. I know I have said that before…but, it has taken on a whole new meaning in the last 24 hours. I’m scared to just think positive and be disappointed. I am scared to think of what could really happen if this is something really bad. I am just scared to death. As I sit here and type this, I am shaking…nervous and afraid. I know there is nothing I can do except be here for Ellie at this point. However, that doesn’t stop the tears from falling or the nervous feeling in my stomach.

God, have I made the most of it?

This question haunts me and brings tears to my eyes right now. This is the first thing that crossed my mind when I found out I had CF. I didn’t know at that minute that I would live for years to come and I was scared. I wondered if I had made the most of my life. I have done the important things…go to college…have a job…get married…buy a house…have babies. However, have I made the most of those things? Some of them aren’t really that important to me (in the grand scheme of things):
College: Ask my parents…I am pretty sure I made the most of my 6 years there!
House: A house is a bunch of bricks to me…it is what is inside that makes life worth it.
Job: I loved it while I was there…but, I really love being at home with Ellie more!
The marriage and baby and basic happiness are what I feel like I could make more of. I started to do more to accomplish this after the CF diagnosis and then slipped right back into my routine. Easy street.

Now, with all of this happening to Ellie, I am left with the same question. Have I made the most with my time with Ellie? Why haven’t I taken her to the park more? Why haven’t I taken her to the zoo more? Why do I keep her in a house with me just so I can get work done? Shopping…is probably more for me than it is for her! I feel guilty…and I know it is the fear that is bringing it on. I feel guilty for not being in the hospital with Bennett when he crashed. I will never forgive myself for that, but I was with Ellie trying to give her a little piece of normal that day. Was I neglecting him…no. Do I feel like I made the most of my time with him…no, because I had another baby at home. I don’t ever want to have those same regrets.

The truth of the matter is that I don’t feel like we’ve been to hell and back. I know it could be a lot worse and I don’t ever lose sight of that. I don’t feel like, “Why me???” because it’s not just me…there are millions of people out there dealing with equal and beyond what we are dealing with. However, I have said this before…every single person’s situation is their OWN nightmare.

Oh, whatever! I am so tired that I can’t even get out what I really mean to say.

In an effort to “make the most of it” we took Ellie to the rodeo last night to see Alan Jackson. My heart was so full watching her excitement and joy around the animals, people, food and music. She loves life. She loves animals and music and food. She had a total blast and we had a blast with her!!! Biddie went with us which made it even more fun. We got to see the new 14 piglets that were born on Monday and we also got to see a lamb that was born 45 minutes before we got there and she was a twin!!! She weighed 8 lbs and her twin BROTHER weighed 20 lbs. It was unbelievable! I absolutely HATE petting zoos b/c when I was little I had a lama jump up on me to get the food I was carrying (not to mention the millions of germs in there!). However, it wasn’t about me, so I sucked it up and took Ellie in there alone (before B arrived) and she was in heaven! I of course, was not and I was especially annoyed and flustered when I turned around to find the GIANT deer gnawing on my leather vest! There is nothing in this world that makes me happier than seeing Ellie as happy as she was last night. It was pure joy for her. My pure entertainment came in when B entered the petting zoo with Ellie and a GIANT goat came flying at him in order to rob him of the animal food he was holding in his hand!!!!! I laughed so hard b/c you should have seen the look on B’s face…

My favorite moment was holding Ellie on my lap and sitting next to B when Alan Jackson sang, “Remember When” it was a great night!

Please, please, please pray for the health of our precious baby girl. Pray for her strength to withstand the doctor visits and the testing. Pray that she can overcome her fear of the doctor and that she will always feel comforted in our arms. Please pray for a miracle…that this is nothing and it will just disappear with time. Please pray that B and I continue to have the faith and strength to fight through these battles. Please pray that we can enjoy our days with Ellie without worry and that we can sleep peacefully at night and let our hearts take a break. We need all of your prayers right now and we thank you for taking your time to continue to keep our family in your hearts. Don’t forget to make the most of it today!

Blessings,
Angie

Neurologists, narcolepsy, two freckles and a vein

Holy cow…it was a long one…a really long one!

I’ll start with the neurologist. OOOHHH…how I wish I didn’t have to add another “ologist” to our medical repertoire. In this case the neurologist is not for me (although at this point it could be right around the corner) and it is not for Brandon (debatable if you really know him) the nightmare is that it is for our baby girl. Rewind to last week. Ellie woke up from a late nap and Brandon pointed out that she seemed a little “wobbly” I chalked it up to being groggy from her nap. We noticed her losing her balance a few more times, but honestly we didn’t really think anything about it. On Saturday, she really seemed to be off balance. Brandon and I were both worried…really, really worried. Fear rushed over me because to be completely honest we are no strangers to the “worst case, 1%’er category.”

Insert side note here: I am not at all trying to sound negative. But, you have to understand where we are coming from. For the last 5 years we have been battling with the odds in the medical community. This doesn’t have anything to do with a lack of faith (although it is definitely a test of faith). It doesn’t have anything to do with pessimism. It doesn’t have anything paranoia. It’s just the truth…it is fact…it is exhausting at this point…

So, this morning I noticed Ellie stumbling again…badly. I doubted myself at first. I called Brandon and we decided that it was time to call the doctor. I explained the issue and he asked me to tape her episodes. He wants a visual and he also wants to refer her to a neurologist. WHAT…I thought maybe we would talk about an ear infection…something “meaningless” not a neurologist. My fear about the worst case scenarios played in my mind. I mean is this really happening? At what point is enough just enough? I debated about writing about this. Is it weighing heavily on my mind? Yes. Am I scared to death? Yes. Do I pray every single minute of the day that it is nothing? Yes. Do I feel like I have to prepare myself? Yes. So, tomorrow I will tape her. Then I will bring it to him and hold my breath…and pray. One of the reasons I decided to put our situation on the blog is because I know you will pray for our baby and our strength and quite simply a "break" from God. I will keep you all updated as we learn new information.

Narcolepsy. Oh, Brandon…he just can’t help himself! I looked up the definition of narcolepsy and this is what I found: A condition in which a person experiences extreme tiredness and possibly falls asleep during the day at inappropriate times. I’m kidding of course. Brandon doesn’t have narcolepsy, but it is pretty entertaining to watch him try to stay awake…especially in a doctor’s office when WE are supposed to be talking with the genetic counselor.

No, Brandon didn’t fall asleep…but, I know he really wanted to! It was a marathon 1 ½ hour meeting about genes, mutations, PGD, IVF, deleations, etc. Thank goodness I spent countless hours researching b/c I met my match today in that office. I don’t feel like I was unprepared, but truthfully we didn’t learn anything we didn’t already know. She didn’t have Bennett’s DNA results from Women’s so after a long talk we wrote up a plan.
1. Switch fertility doctors
2. Evaluate Bennett’s and B’s DNA results
3. Letters to insurance company about covering PGD and/or IVF
4. Contact the genetic centers that will prepare us for the PGD (preimplantation genetic diagnosis)
5. Reharvest (if necessary) and perform PGD
We are looking at about 4-5 months realistically; however I pretty much told her today I am shooting for 3 months. I am not getting ANY younger here people!

I had a lab slip that was sent over from my OBGYN to have a blood clotting study performed. The subchorionic hematoma I had during my pregnancy isn’t normal (clearly) and she wanted to make sure it was due to a clotting issue. If it was they have a medicine regimen they would implement if another pregnancy were to be achieved. So, reluctantly I went down to the lab to have “a little” blood drawn for this simple test. Turns out, it’s not a simple little test! Three veins and 21 vials of blood later the phlebotomist was done and I was nauseous! The big joke of the afternoon was that my veins wouldn’t cooperate. She would get a few vials and then the vein would shut down (story of the rest of my body!). So after 2 veins failed I was ready to call it quits. She gave me a minute to calm down and I decided that coming back for 4 more vials was NOT an option for me! I mustered up the courage and told her, “You know, between these two freckles there is a good vein!” How embarrassing! We all got a good laugh…and the good news is that I was right! Why can’t the rest of my medical solutions be as simple as that?

Oh, mercy! Sometimes, I don’t even believe all of this nonsense. I know it could always be worse and I am grateful for the beautiful blessings I have been given (more grateful than I could ever explain). Sometimes, I feel like if I would just give up on trying to have another baby we would eliminate a lot of the pressure and heartache. The problem is…I have never been a quitter. I guess I figure why start giving up now…

Blessings,
Angie

2222

Okay, my husband thinks I am a total dork, but I forgot that I wanted to make a special post for Ellie today because she is 2 years 2 months 2 weeks and 2 days old! That won't happen for another year...so, technically DADDY that is a cool day to celebrate. I can't tell you how much I have enjoyed the last 2222's...they have been some of the best days of my life!!! Here is my little model in her new dresses! Enjoy the slideshow! :)
Rodeo Girl!

Wild woman!

Date night!

Weekend recap

Phew…it was a busy one! Ellie and I ran errands most of Friday and B called in the middle of the day to ask if we wanted to move the rodeo cook off to our schedule on Friday night…sure, thanks for the notice! So, I spent the second half of the day shopping for a “rodeo” style cute shirt. Not a whole lot of luck! Eventually, we made it back home and got ready in record time. Biddy is at the tail end of her sickness, so we got Blakely over to babysit.

We left our house at 6:15 and didn’t get into the cook off until about 8:30…TRAFFIC!!! It was so stinking HOT outside that by the time we power walked 2 miles from the car it really didn’t matter that I spent 4 hours looking for a cute shirt b/c I didn’t look cute anymore anyway! It was crowded and humid and by that time B and I were both exhausted. Usually, we love going to the cook off. B loves to eat and BBQ happens to be on the top of his list. There is usually a big group of friends and we spend hours having a blast together. So, to put it mildly we were disappointed this year. We look forward to going every year and we were let down. We actually left at 10:30 (we usually close the place down) and headed over to a friends house. We were sitting outside waiting for the “cold front” to blow in and sweating to death in the process! As we visited I noticed B’s head bobbing up and down. The rest of the conversation went like this:
Me: B let’s go home
B: No, I want to check this dishwasher out first

We all look around the table at each other…

Friend: B, man, I have like a 22 year old humdinger in there. Not really anything to check out.
B: looks at all of us and starts laughing…he had fallen asleep and was sleep talking!!! ABOUT WORK!!! I told you he had been working very long hours!

After a good laugh, we got in the car and I drove home! Some “party” Friday night we had!

Saturday was supposed to be as busy as Friday. On the agenda: Bridal show, B had work to do, dinner date with Ellie, Uncle Chris and Aunt Steppy.

I decided to skip the bridal show with Aunt Katie. The family hadn’t spent time together in a week and Ellie really needed to hang out with mommy and daddy together. We played and ate and then I decided to make her a fancy new dress for our date night. It turned out adorable!!! I am so pleased with the seamstress in me. Obviously, I need a little more practice, but so far so good! We all got ready for family night on the town as we had decided to take Ellie to the Downtown Aquarium for dinner. The only issue…we had played so hard all day Ellie didn’t get a chance to nap. That actually turned out to be a blessing in disguise b/c she slept the whole 1 ½ hour wait while the adults got to hang out! AWESOME timing! She woke up as soon as they called us to our table which just happened to be right next to the big aquarium. She had a huge smile on her face like she was dreaming about this underwater adventure. We all had a blast together! Spending time with Ellie, Uncle Chris and Aunt Steppy beats any other plans we could have had. Truthfully, it was the best night out we have had in a very long time…maybe ever! At the end of dinner (by the way the ambiance at the Aquarium is awesome…the food is terrible!!!) we took the train ride through the shark aquarium…it was so cool…literally! You see, the “cold front” had come in and it was actually 40 degrees and very windy…I think it made it even more fun!

Saturday turned into Sunday and it was time for daddy to get more work done. Ellie and I headed to the store because Grampy was coming over for dinner (mimi is in Denver). On the menu:
Homemade chicken enchiladas, guacamole dip, pico de gallo and salsa. I haven’t made every single bit of dinner from scratch in quite a while, so I was a tad busy for the rest of the day. However, dinner turned out great and Ellie had a blast with Grampy. Obviously, she had a lot of fun b/c here it is 11:30 am and she is still asleep!

Our appointment with the GC is tomorrow at 3:00. I am not feeling one way or the other right now b/c I feel like I asked her most of my questions last week. I do hope that she was able to get Bennett’s lab results from Women’s, b/c I am dying to know which mutation he has of mine (I am guessing along with everyone else that it is DF508). At least we can talk about getting the letter to the insurance company appealing the cost of the PGD and the reharvesting/fertilization of new eggs. We need prayers…lots of prayers!

Happy Monday!
Blessings,
Angie