Monday, January 26, 2009

Adroable

Yesterday morning, we were in the truck driving to church after picking Wilson up from my mom's (yay date night!) when I sneezed. Wilson proceeded to say "Bless you Mamma." Seriously, I melted more than ever. What a sweet sweet boy.

We start speech and feeding therapy tomorrow, which is also our friend Justice's birthday. Hooray for being two. Wilson's Grandma Shelley also arrives in Cincinnati on Wednesday, and they haven't seen each other in about 26 months. How exciting.

Blessings, wilsonsmom

Tuesday, January 20, 2009

Interesting.

Today, we had an appointment with one of the best pediatric allergists in the world. And we still don't know much. I feel like we had to convince him to do another round of allergy testing, and hubby said he felt like they didn't believe Wilson is as bad as he is. They just kept saying "tell me about his allergies." Gee, that's not the most broad question EVER.

He finally tested for 45 foods, and Wilson tested positive for peanut, milk, egg, almond, banana, beef, chicken, turkey, pork, white potato, and barley. The weird thing is we aren't sure what this means. He isn't having awful reactions right now while eating white meat, so we are going to continue to feed him the same things as before at least for now. The allergist and GI are going to talk Thursday, and call me sometime this week or next and let me know what they think is best and where we need to proceed.

The allergist also says there is very little chance that Wilson has EE. This doesn't rule it out, but it could just be allergies. If it is just allergies, we would start going to see the allergist regularly, and do other forms of allergy testing (we only did the skin prick test, which made hubby and I both much more at ease.) Depending on how those turn out, we may start attempting to reintroduce new foods one at a time.

I know it seems like we got somewhere, but hubby and I still feel stagnant. We keep seeing these specialists, and this one's supposed to be better than the previous, and the next one will have the answers, etc. Except that when we go, there are still no answers, no treatment plans, nothing. We just want something to hold as truth, someone to give us answers, hope, anything.

On a different note, what a funny thing to watch Wilson dance and clap during the Neighborhood Ball on television tonight. Our President is now "Morebama" according to the monster.

Peace, Wilsonsmom

Friday, January 16, 2009

What a busy week!

We are absolutely blessed to be in the position we are in right now. Yesterday, a dear friend of mine went to the children's museum with monster and me, just to wear off some energy in a warm environment. (For those of you in warmer areas, as I type, it's -6. Gross.) While we were getting ready to head in, I got the phone call I have been awaiting for two weeks. We have an allergy appointment next Tuesday at 10 am.

That's just the beginning of the good news. The allergist we are seeing is world-renowned. This brings such a comforting feeling to me that I didn't have before our last visit. Our original allergist is fine, but this man is the best at what he does, and he's going to see our kid. It's a strange feeling, and I'm not quite sure how to explain it, I'm just so humbled by the ability to see this man and have him treat Wilson. This appointment will be different in many ways, it will take about 4 hours total, and we will also do a patch test. The allergist will place the foods he tested negative to in the original test on his back and leave them there for 48 hours. During that time, his body will be able to react to the food and register either safe or unsafe. This is something that isn't done terribly often, unless it's a person with multiple allergies or they suspect something unique is going on in the body. Typically, an allergy reacts immedeately, but there are instances where the body can react over time.

I am asking for prayers Tuesday for Wilson. 4 hours is so much longer than we are used to, and it's right into nap time, which he DOESN'T miss. You really don't want him to miss nap, trust me. My prayer is that the doctors and nurses are able to treat and diagnose him accurately and efficiently and Wilson stays calm enough to endure the entire series of tests.

We will return to the hospital Friday to read the results of the patch test, and I also hope that the results are clear to read and understand for the doctors, and that we as a family adjust quickly and in the best way possible.

Wednesday, we also have his meeting to plan out this occupational therapy schedule, give our short-term and long-term goals. At this point, I just want him to stop biting and to eat more. It's getting harder and harder to make food for him. We're trying lots of new foods every week, and some work better than others. Hubby fried some "eggplant french fries" that he loved and devoured. Mushrooms worked once, but the rest of the time he throws it, and broccoli is a joke. But eventually it will get better, I know this. We just have to continue to introduce foods and be consistent with him.


Have a great weekend, and stay warm. Wilsonsmom

Wednesday, January 14, 2009

A New Year, A New Purpose

Well, hello there! For those of you who don't know who I am, I am wilsonsmom. Simply put, my son is Wilson, monster, booger, etc. He is a fantastic little two year old who happens to be allergic to LOTS and LOTS of things (peanuts, tree nuts, milk, egg, soy, bananas, peas, beef, oats, barley, corn, potatoes, shellfish, legumes, dogs, and cats.) We are currently working with some of the top doctors in the country to find a reason for all of the allergies and more importantly to help our little man have the most normal way of life possible.


Lots of my previous posts have been in regard to this, but from here on out, I will be blogging exclusively about him, doctors appointments, therapies, and what God is doing in our lives to show is His power. This is the easiest thing we can do to let you all know what is happening, how Wilson is doing, and how we are. We are so fortunate to have such a wonderful support system and people who love us, but it often overwhelms us to wonder who we've told what, who we've called, etc. This doesn't mean some of you won't get personal updates, but this is much easier, especially after a difficult day like we had last week.


Last weekend, we went to a friend's graduation party, without Wilson. As we were introduced to their friends, they gave our names, as well as "They're Wilson's parents." At this point, someone said, "Wait, this is the boy everyone fasted for, right?" and it made me realize that at one point, I had an amazing way for people to know about who we are, who God is, and how we are doing all at the same time. And I let that go, because I'm lazy and didn't use that opportunity. So here goes nothing.


Wilson was born a pretty normal, slightly chubby boy with bright blue eyes and a head full of black curly hair (which I LOVED and miss so much!) Everything was pretty normal for the first four months, until he started vomiting and stopped gaining weight. Let me clarify what this means, because this was key. He gained nothing for several months, and with infants, it's crucial for babies to gain weight; it's how they monitor their health and development. When we went to the pediatrician, they informed us that they wanted to run some tests and check for allergies.


I had heard of peanut allergies more and more lately, especially with my job (I'm a hairstylist,) so I was mindful of that, and I even considered that he might be allergic to our precious dog. When we got back the blood work, we were told he was allergic to peanuts, milk, eggs, wheat, and dogs. Bye bye Makella and peanuts from our lives, my favorite food and our first "baby." What a blow, but we held on.


My brother in law graduated from basic training in September 2007, and we were lucky enough to get to go, and travel on standby for next to nothing, and decided it probably wouldn't be safe for him to tag along, so my mom and sister helped watch him for the three days we were gone. Let me tell you, those were a tough few days away, but now I know why God allowed us to have that time. It was the beginning of the downward spiral that was our lives. After we picked him up from my sisters, I noticed he was pulling to breathe, and asked my sister about it, who told me it had just started minutes earlier. I tried to wait it out until the next morning, and called the pediatrician, who wanted to see him immediately. We started running more tests, and after about six weeks of looking for everything else that could be wrong, we discovered he was allergic to tree nuts, soy (the SOY formula he was on,) bananas, peas, and cherries.


Our lives changed again, watching everything we gave him and what we ate. After some pushing, I called an allergist, who told us it was safe to eat peas, cherries, and wheat. (I've blogged about this in the past.) Last spring we tested again after having a lot of health problems with him, and found peas were a bad allergy, as were cats. Then, this fall (past blogs cover this as well) we found out about oats, barley, corn, potatoes, and beef.


He told us to call Children's Hospital GI department, and look into a disease called EE (Eosinophilic Esophagitis.) We had our first appointment Monday, January 5 at the hospital with a GI, speech pathologist, and nutritionist. After our visit, my husband and I felt like we left with more questions than answers. The GI wants to run a new baseline of allergies to see exactly what he can and can not tolerate, because at this point, he is developing allergies to everything he eats, but with avoidance seems to be able to heal from them. We will be seeing a world-renowned allergist for this, and are just waiting (as patiently as possible) for an appointment with him. The most difficult thing is we wait for them to call us. If I don't hear from them by Friday or Monday, I do get to call their office. (I choose FRIDAY!) We will also be seeing numerous other specialists to ensure he gets better as quickly as possible.


So that's where we are. We also have a meeting next Tuesday with a therapist who will be helping to get to the bottom of his sensory issues (he bites everything he can, especially his friends) and hopefully his eating problems, since he's starting to lose weight again. Through all of this, though, we are trying to keep our eyes on the future and know that God has this all figured out already, we just have to wait for Him to give us answers.