Christmas Season

Well, I'm so excited for Christmas this year. Now that we have little Reece with us, it just seems that our family is complete. This will be our first Christmas with both kids and it is just going to be so fun! Olivia helped get the tree decorated which was a big deal. Note that all of her favorite ornaments are located at knee level in a group. This allows for easy access so we can reorganize them when needed :o) This is probably the earliest we've ever put our tree up, but I just can't resist that fresh tree smell and all the bright lights. It just makes me happy. Yesterday I even turned the TV to one of those all music stations playing all Christmas music.





We've also seen our first bruise with Reece. It's right on his ribs and it's about the size of a nickle. He got it about a week ago, and I'm not sure if it's from us picking him up or him falling on a toy. He's sitting up unassisted now (momentarily) but we sometimes crash over when we reach for a toy. Just a glimpse of things to come I suppose. The good news though is that it doesn't seem to be tender.

Factor Results

Well, finally we have the results from the factor test from the Hematologist today. They came back that his level is 1% which is actually better than when we had him tested in the NICU. I haven't confirmed this with the doctor, but per the Hemophilia.org website this puts him just barely in the moderate category! I'll hold off my cheers for when we actually see the Hematologist in January. However, it is better news than I thought. Here is how the website breaks down the categories.

Normal Range - 50% to 200%
Subnormal Range - 25% to 49%
Mild Hemophilia - 6% to 24%
Moderate Hemophilia - 1% to 5%
Severe Hemophilia - Less than 1%

Well, speaking of......I hear someone calling my name through the monitor, so I'll be posting more later!

GI Doctor

Okay, just back from the GI Doctor at Children's Hospital. She actually believes that he still does have reflux issues, and that the allergy stuff isn't something to be too concerned about. To be honest, we didn't understand a lot of what she told us. She talked about how his immune and digestive systems are apparently attacking the proteins in his formula causing his reactions such as the severe eczema and digestive issues. She has suggested we switch to Nestle Good Start which has their proteins partially broken down already. She also prescribed a concoction for of meds for us to give him for the reflux. We have to mix Mylanta with Zegerid and give him a set amount 3 times a day. Uhhhh...more meds. This will actually replace the Prevacid and the Zantac though. She said we should hold off on the solid foods until we get him ironed out on his formula too. So, we're off to buy this new formula and get his prescriptions filled. We will go back to see her in 3 weeks to see how it's going. Stay tuned...

Test Results

Okay, sorry it's been such a delay on this! Believe me, it's not for lack of me trying to get the info out of the lab! Thanks to my right hand lady Alisa at the pediatricians office, we did get partial results in the allergy portion of the blood work. It turns out he does have a mild allergy to dairy and an even milder allergy to wheat. The doc. told me though that the rest of the results would be back after the holiday most likely. After some thought, I feel like this is actually pretty good news. If this is the root cause of his issues, it's fixable, also since it's not a severe case hopefully it won't be a life altering issue! We've decided not to do anything yet until we have the meeting with the GI specialist next week to see what they suggest based on these results. They also said that these results aren't exact and that a skin scratch test would be needed. Guess we'll be going to an allergist next. The factor level test still hadn't been done as of this afternoon so that will be after the holiday now as well. I guess I feel a little validation though with this info. Now I feel like I'm not a crazy hypochondriac of a mother, and that there are some issues here.

Also, on a different note we've begun sleep training for Reece. After so many nights of getting one to two hours of sleep between 1am and when we all wake up I've decided it's time to do a little sleep training. As of Sunday he was still being swaddled, rocked to sleep, at least two feeding a night, and still sleeping in the carrier for the first half of the night and the swing the rest of the time. Well, at 6am Monday morning, I decided after NO sleep for the previous 5 hours that I was ready to make a change! I'm happy to report that he has not been swaddled since then, he has also slept in his bed (with the exception of 5am-7am this morning). Last night was an every 30min to an hour waking up, but I'm hopeful that tonight will be better. I had to give in on the swing this morning to keep my sanity. Tonight I almost shed some tears, he went to sleep by himself in his bed with only my hand on his chest for a few minutes! He's still very reliant on the passy, but one step at a time. I'm off to bed in a few minutes in case it's another night like last night!

Hope you all have a wonderful and blessed thanksgiving!

Did I hear Ma Ma??

Okay, I know I'm the MOM, but hey this sounds an awful lot like ma ma.....his first word!

Also, here are Olivia's school pictures she took last week. I was so thankful she actually participated this time. Last year, we refused.

Dr. Visit Yesterday

Okay, sorry for the delay in the update on the appointment we had yesterday. Reece came down with Olivia's cold last night and it has been a LONG 24hrs around here.

The appointment went pretty well actually. We got right in this time thank goodness. Our dedicated nurse and an assistant were the ones who did it. Reece was REALLY mad about having the tourniquet put on his arm and he especially didn't like everyone holding him down. Therefore when we got to the needle part he was already so mad I don't even think he noticed. The first try he jerked and caused the nurse to poke him wrong...it two places, so had to move to plan B....his other arm. Even though the nurses didn't think the vein was as pronounced on this arm she popped the needle right and a couple of second later we had what we needed.

Later in the night I noticed that where we had taken his bandage off of his first arm, it had continued to bleed onto his PJs. I just put a band aid on though and it stopped. The other arm that we actually got the blood from has a pretty good bruise on it. These two things really lead me to believe that he is still going to show less than 1% factor.

The nurse told us that it would be a week for the results, but I'll be calling and bugging them starting Friday :o) I'm so ready to find out if all his issues really do have a root cause. As soon as I know, I'll let you all know.

On a lighter note, Olivia has her Thanksgiving program and "feast" as school tomorrow. I'm sure it's going to be really cute. I'll take some pictures and post them when I get a chance. I just can't believe that Thanksgiving is NEXT week. It seems like I just slept right through summer!!

Busy Week!

Well, Olivia's friend Emma had her 4th birthday party yesterday at Chucky Cheese in Round Rock. We had such a great time! I was afraid we may not make it since Olivia had a cold this weekend with a slight fever, but like always it only lasted about 24 hours and she was back bouncing off the walls in no time. Her favorite game in the arcade was air hockey. She's played it before and tends to get a little aggressive at it. I have to keep reminding her to not hit the puck too hard and to not climb on the table :o) She did find a little boy who was maybe a year or two older than her and he could keep up. She also really enjoyed the shooting games such as Jurassic Park Shoot the Dino game. I just know she'll be out hunting in a year or two. She doesn't get that from David and I though!

Birthday Girl

The Game Face

Look at the DINO!!

Also, check out my little DIVA! The picture says it all wouldn't you say?



Reece goes to the doc. today for his blood work. This will be the first time since the NICU that he has had blood drawn. I'll admit, I'm a little nervous. The Hematologist has been waiting until we needed blood work done to check his factor levels as well. This will also be the first time since we first found out he has Hemophilia that we check this. When he was born his levels were less that 1%. This is what puts him in the "severe" category. I'm not even going to let my self hope that this test will show anything different. Here is a description of the three levels of severity that I copied from the Nat. Hemophilia Associations website. I'll let you all know when the tests come back for both the allergy and the factor levels.

• People with mild hemophilia (6% to 49% factor level) usually have problems with bleeding only after serious injury, trauma, or surgery. In many cases, mild hemophilia is not discovered until an injury or surgery or tooth extraction results in unusual bleeding. The first episode may not occur until adulthood.

• People with moderate hemophilia, about 15% of the hemophilia population, tend to have bleeding episodes after injuries. They may also experience occasional bleeding episodes without obvious cause. These are called "spontaneous bleeding episodes."

• People with severe hemophilia, about 60% of the hemophilia population, have bleeding following an injury and may have frequent spontaneous bleeding episodes, often into the joints and muscles.

Reece Saga Cont.

First, thanks to all the people who have emailed or had comments with helpful suggestions for us with Reece. We really appreciate it.

On a different note, we MAY have figured out what his problem is though! Last week, after we took him off the Nutramagin, and put him back on the Similac Sensitive, I also started giving him his Oatmeal again. Since he was having such a hard time with the Nutramagin, I had stopped his solid foods to try and make it easier on his system. I'm not sure if it was changing him back to the old (milk based) formula or the oatmeal, but all his old symptoms came back, plus some other issues he has had for awhile that I didn't think were related.

A couple of months ago his cradle cap came back (the Dr. said), but much worse than when he was born. It looked also like it had spread to his whole face. One of the reasons he has a hard time sleeping and fights the bottle is because he rubs his face and head sooo much. He's actually made blood come out on his scalp from scratching at it so hard. We've been putting on the prescription cream the doc. gave us and I thought that is what cleared it up. I've also noticed these red bumps (hives I now think) all over his chest and neck from time to time. I didn't think they were anything other than dry skin. Lastly, his stomach issues. He always acts like he has tummy cramps. Pulling up his legs and crying during and after his feedings and arching his back all the time. Well.....when I was talking to my mom on the phone I told her how red and irritated his face was while I was feeding him his oatmeal. She said, I wonder if he is allergic to it. That got me thinking so I went online. Oh my goodness, it may all be a coincidence, but a wheat allergy (which can also been seen in oats or barley) or possibly a dairy allergy can give an infant ALL of these symptoms he's been having. I immediately called the doc. and she said to take him off the oatmeal, but not to change the formula just yet. He has been on soy before, but it made him SO constipated, that they had us change back to a milk based formula. That's also about the time I started introducing the oatmeal, so I'm not so sure what to think. I so torn between feeling a little excited, that we may have an answer to all his unhappiness and feeling stressed at possibly having a baby with, not only a rare blood disorder, but also a major food allergy. We are going to the hematologist on Tuesday to have them take blood (I felt better with them doing it) and they will send off for the allergy test. I just HATE waiting...especially now that I think every bottle I give him is making him sick. After the blood work goes off to the lab, they said it could take a week to get the results.....Uhhhh!!

If anyone has any experience with these (or any type of food allergy) I would love to hear your thoughts on this. It just really all seems too coincidental to me.

Reece Status Report

Well, my little angel is still not doing so great. He's still having SUCH a hard time at his feedings. If we don't swaddle him to eat, he fights the bottle and cries the entire time. It's feet to get a few ounces in him these days. He still HATES to be in the carrier. I can't usually keep him happy for about five minutes in the car, then he's already at volume 10! We pretty much just stick around the house since it's such mess to take him somewhere.

He is continuing to gain weight though...16.5lbs a couple of weeks ago. At the suggestion of the doctor and several friends we did switch him to yet another formula called Nutramagin this weekend. It's incredibly expensive, but is "suppose" to help with fussy eaters and reflux issues. We just started it on Saturday night and so far not too much of a change. He still wakes up every hour (sometimes more) for either the passy or a bottle. He is still sleeping in the car seat at night, and sometimes napping in his bed. He doesn't seem to eat as much of this and he has had diarrhea since yesterday. I'm hoping that just from the change to his system. He's also now of the age that he doesn't like new tastes, so the first night was a NIGHTMARE. He did not want that new formula, and David finally had to take over feeding him because I was just too upset. He cried forever, but did finally give up and ate it. We're going to keep the new formula going but not so sure of it's success.

We went to see his pediatrician about all this a couple of weeks ago, and basically she told me that she was giving us the max. dosage of reflux meds. that she could, and she was really at a loss of what his problem is. She referred us to a GI Specialist...but of course they can't see us until the end of Nov. I'm so afraid when we go though, that they are going to say, there isn't anything physically wrong with him, that he's just a little monster when it comes to eating. I just keep hoping there will be a magic cure for him, but at 5 months, I'm thinking he's just going to have to grow out of it.

If anyone has any suggestions to help him sleep or eat better I would love to hear them! Throughout all of this, I just can't help but say he is stilll such a cutie pie! Here are a few recent pics

Reece Giving Me Sugars

Who Me?

Pilgrimage to Canton

Well, my girlfriend Maryann and I made the journey to the shoppers holy land AKA Canton Trade Days! For those who aren't familiar, it is a shopping paradise for all kinds of creative and unique items you can't find anywhere else. We went up on Thursday night and shopped Friday and drove back that afternoon. Let me just say, that I think most people in north Texas (and possibly the surrounding states) were ALL THERE the same day we were! It's was so crowded. Thank goodness we got there right at 8am on Friday, because by noon you couldn't even get down the isles. We did have lots of success and a great time as well.

Maryann was the perfect person for me to go with, because we had our priorities totally in line! Had some yummy Mexican food when we got there Thur. afternoon, a few frozen beverages, but were back at the hotel in plenty of time to see Survivor and Grey's Anatomy! What a great trip!! We've decided we will be going back....just after the holidays the next time :o)