Tuesday, November 3, 2009
Here it goes again...
Thursday, June 18, 2009
I really am a slacker.
Tuesday, May 12, 2009
Community
Today, we found out precisely what it is. While changing the monster's diaper this morning, I noticed his stool was quite runnier than normal, and there were peas in his stool. Mind you we haven't had those in months, so I was quite surprised. I called the daycare and discovered that they had in fact served peas yesterday for lunch. Knowing hubby didn't serve them to him, I realized he ate some at school. When I asked his teacher about it, I was told that they didn't have time to worry about things like that. So, needlessly to say he will no longer be attending that particular school.
I do have a meeting with the owner of the school today to let them know that this should not happen and to further discuss other issues we have come across with them so they can improve. I pray that God gives me the strength and the words to accurately and calmly describe things to her so she can keep this from happening again.
We also have an interview with another daycare tomorrow that specializes in children with sensory issues and exceptional needs. I am praying this is the opportunity we have been looking for all of this time, somewhere he can be the sweet loving boy we all know he is.
Through all of this, I have needed to find somewhere to send him for the next three weeks until the other center has an opening for him and fortunately through the gifts of God's faithfulness, we have someone to watch him every day except one, and I have tow available people for that, just determining which will do that.
So thank you Father for your grace, protection, and love. Thank You for guiding us into a community of followers who want to help one another and to serve You.
Blessings, wilsonsmom
Thursday, May 7, 2009
I'm a bad blogger
We have also been to Childrens Hospital recently. Our allergist asked us to start reintroducing soy seriously, and while I am hesitant, we are following the doc's orders. And so far we're doing well. We also let him try a bit of a mild, flaky fish with success (thus far.)
Now onto the big news, Wilsonsparents are taking our first family vacation! Hubby's grandma is not doing well, so we are going to fly to Florida soon and visit. Wilson is so excited about flying in an airplane! He keeps telling us he'll be like the birds. I'm certain Wilson will get to try more fish while we're down there.
This month, the monster will be two and a half, and while the time is flying by, I'm finding myself even more in love with my monster than I thought possible. He just has the best personality (most of the time,) and he is starting to love his momma! This means not everything is all about "my daddy, my daddy" as it has been. This morning we've been "nuggling" and watching a bit of television while deciding what we're going to do today. I just didn't realize I would enjoy him as much as I do.
So go outside, enjoy a nice time swinging or sliding, and think of us!
Blessings, wilsonsmom
Wednesday, April 1, 2009
So there was this boy...
Little did I know that six years later I would be sitting in our house having a delicious dinner and glass of wine, snuggling and watching TV with our son asleep upstairs. In just a few short years we have gone through death, life, friends, childbirth, among other things.
So happy sixth anniversary baby. I love you so much.
Monday, March 23, 2009
Spring has arrived!
We found out last week that Wilson has Sensory Processing Disorder, but I'm not exactly sure what that means yet. A book I was directed to by one of our therapists, "The Out of Sync Child" tells me that it is "the inability to use information received through the senses in order to function smoothly in daily life." I haven't gotten too far yet, but so far, everything describing a sensory-seeking child seems to be all Wilson. I am certainly interested to see what else this book has in store. We are also waiting on a report from the wonderful woman who did his assessment on exactly what she saw when she spent time with him at his daycare. I am anticipating this will shed some light as to what we as his parents can do to best satisfy our little monster.
We are working on finding an occupational therapist who is available to take him on as well as wondering exactly how "therapy-friendly" his daycare truly is. As of now, they are showing quite a bit of resistance and a serious lack of concern for his best interest (IMO.) While I realize they have a job to do, we need to do what's best for him. I am currently exploring options recommended by his PSC and assessor.
At this point, I'm just praying that we get things moving quickly and in a direction that is the most effective method for Wilson.
On a side note, Happy Happy Birthday to our friend Jill. Our family loves you and your boys, and we hope today is fabulous.
Thursday, March 5, 2009
GI Follow-Up
We have been working on the sweet potatoes, and Tuesday night, right after dinner, Wilson broke out into hives, as I posted. They went away, but at four o'clock this morning, we heard him coughing and crying, so hubby went in to check up on him, and found he had vomited and had a very high fever. We gave him Tylenol, then Motrin a few hours later when it wasn't going down. I just prayed for it to at least go down, then we started our morning.
This morning, my wonderful friend, Jessica, accompanied us to Children's Hospital for Wilson's GI follow-up from two months ago. Hubby had a very important meeting at work he wasn't able to miss, and her joining us was such a blessing and help, because it enabled me to talk to the doctor without worrying about his behavior (or his obsession with the phone in the offices or washing his hands one thousand times while he's there.)
Dr. Franciosi basically told us that he was quite certain Wilson should not be eating sweet potatoes, and he wanted me to call the allergist about it. He then proceeded to tell us that he is fine, we should be thankful for his size (36 3/4 inches and 35 lbs.) and not worry so much about the allergies.
*Mom time* This doctor obviously has never had to take a child with 15+ food allergies to a family dinner with absolutely no knowledge of how he was going to feed them and keep the child safe. He has never had to worry every minute of his day that someone ate an egg then touched him, causing anaphylaxis. But I have, and I know what that is like.
I also know that this doctor sees many many children that are much worse than Wilson and has many more issues than he does. But those are not my children, and fortunately for me, we are not in that circumstance. That doesn't mean I do not want to know what is going on.
So here it is. God, take it. Take my son in your hands and HEAL HIM. HEAL MY BABY. You are the only one who is able to do this. I have nothing without you and everything with you. Please use us, our story, our family for Your glory and Your good. I give up, it's all yours.
Blessings, friends. Thanks for the prayers.
Tuesday, March 3, 2009
in addition...
Tastes like chicken? Nah...
His news was wonderful! We are going to eliminate chicken and beef (meat-wise) for six months and see how everything goes. All foods that he is not testing positive to (including the fabulous five we started this week) are fair game, just one new food per week, and we will check in with him in SIX MONTHS!!! He completely released Wilson unless we have issues with trying the new foods, and he suggested we introduce fish as a way to get more protein in his diet. WOW!! What a change from even a month ago.
Sweet potatoes are going well so far, except I'm not sure if we can get him to stop eating them! Let's see if this happens with peas next week. What a blessing this is to be able to give him the foods he loved so much before we were told he was allergic to them. I'm getting excited about the healthy and yummy foods we will be able to give him in the next few weeks and months.
Thank you so much "reader" for your prayers, love and support while we are on this journey. We will have a follow-up visit with the GI doctor Thursday, and I am hoping for more good news. As always, I will keep you updated.
Blessings.
Tuesday, February 24, 2009
What a month!
Next, we have been quite busy with doctors for Wilson. The beginning of this month, I had a long talk with the allergist and explained my frustrations, concerns, etc. He asked us to come in the next morning (about 3 weeks ago) and have some tests done. We checked to ensure his anatomy was working correctly, and it IS!! This basically means his digestive system, intestines, bowel, etc. all are without defects and kinks. Which is excellent news for us, but also leaves us with more questions. While we were there, we also had a RAAST allergy test performed, which is done through blood. The results were astounding.
Wilson is testing "not-allergic" to sweet potatoes, corn, peas, soy, and oats. If you pay attention to ingredients in food you eat, you will realize this is a wonderful victory for our family. We will start next week introducing one new food each week. I will be in constant communication with the allergist during this time, giving results and receiving input for new ideas for what's wrong with this boy. We will be watching out for trouble breathing, hives, vomiting, diarrhea, among other things, which also means we will probably not be going out too much, to avoid a mix-up with these results.
This week we are also eliminating meat for dinner Monday, Wednesday, and Friday in order to try to decipher the reason for his poor behavior. He has been having a lot of difficulties at school with biting and running out of his classroom during lesson times. We are working on the biting, and that is getting better, but his teachers are worried about him nonetheless, so here goes nothing.
I am trusting that God will hold my little monster in His arms and keep him safe during this time and protect him during these trials. I am also praying for more new foods we can give him, and we've already been coming up with creative ways to tell those we love.
Blessings, wilsonsmom
Monday, February 2, 2009
Quick update
We spoke for about fifteen minutes, and I expressed several concerns I am having, and he said he wanted to see us tomorrow. A few minutes later, the GI nurse called and said they had him scheduled for some tests in the morning. Apparently, the doctors want to make sure that his anatomy is correct and functioning properly before we proceed with anything else.
Tomorrow, I am just going to push the allergy issue. I can't figure out why every allergy test pops up more foods. So let's just hope that we can keep him calm for the entire day while he's there.
Blessings.
Monday, January 26, 2009
Adroable
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.
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!
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
Wednesday, December 31, 2008
Happy New Year
Monday, we have our first meeting at the EE clinic at Children's hospital. We will be seeing world-renowned doctors who specialize in these diseases and want to help him get better. I feel very fortunate to be able to send my son to such amazing providers.
We also had our in-home evaluation last night with regard to his sensory and behavioral issues. Turns out, he is quite bright (her words, not mine!) But does need some therapy time. While I am trying not to feel like a failure as a mom, I'm trying to be thankful that the state will help us with some of the financial aspect of these therapies. They will work with us at home as well as at his day care, which is nice.
Bottom line is I am super blessed right now, very lucky to be able to give my monster these options for his life. Please keep a few of my friends in your prayers. Someone I work with has cancer, and its not looking good. At all. We've worked together for almost 4 years, and this is hard to see happen, especially since he lives in Columbus. Another friend's family life is being completely shaken, and I pray He strengthens and heals her and her family.
Blessings to you and yours, wilsonsmom
Thursday, December 4, 2008
Sitting, Waiting, Wishing
Today was booger's 2 year check up, which was perfect timing because his procedure is Tuesday. We were hoping we could just make sure everything is OK, avoid a flu shot, and go on our merry way. As I'm in the office speaking with our pediatrician (whom I ADORE and respect whole heartedly) about some of what we have been facing the past few months with his biting, behavior, and lack of appetite, he suggests that we send him to be evaluated for developmental disabilities. I understand that this may open doors for better understanding exactly what is causing some of the unwanted behavior, especially since we are disciplining him and encouraging the good behavior, while discouraging the poor choices.
My problem is I am exhausted, I am worn down, I am beat. Every time we visit a doctor, I feel as if something else is catastrophically wrong. I realize I have so much to be thankful for, but I am still feeling beat down and pooped on. We just found out he is allergic to so many new foods, may have a GI disease that will alter his entire life, and now we are testing for disabilities. I have spent the last 2 years and 9 months focusing on doing everything that is best for my little booger, and it is all backfiring. I just feel like something is always wrong with him, and I don't understand why.
In addition, we have been preparing for his "cleanse" prior to his test and have (finally!) eliminated his night night cup. As a result, he has not slept in days. Which means we have not slept in days. He isn't even napping, right now, I'm just hoping that he will even rest quietly. This is also probably a source of my frustration, but I still feel this way.
Again, sorry to be a downer, I know He will provide healing and help for our family, I just have to get this out for a minute.
Blessings, wilsonsmom
Thursday, November 6, 2008
Results
We have good news and bad news from the allergist. The bad news is we have new allergies to
- Oats
- Barley
- Potatoes (all, which means no french fries!!)
- Corn (corn flour too!)
We are now avoiding all of those foods, and we confirmed a severe allergy to beef and peas, which I suspected. The good news is his count for egg, cow's milk, and soy has dropped drastically. Almost to the point of safety.
Before we celebrate too much, we also found out that we will be referred to Children's Hospital for further testing. As of now, we will be doing a scope and biopsy looking for Celiac and Eosinophilic Esophagitis, among other things. The good news is both are treatable, and we know that through avoidance Wilson can be healed of his allergies, however his body creates new allergies. This leads me to believe that his body has something else going on, something that is attacking foods that enter his body and causes things to become allergies. This is a classic symptom of EE.
The other good news is that the first treatment of EE is food avoidance, which we are already doing and we are accustomed to. (See, the fast was a great idea!!)
Thank you all from the bottom of my heart for everything that has happened this week, the prayers, thoughts, fasting, etc. has meant more than you could ever know. May God bless each and every one of you.
Wednesday, November 5, 2008
Less than 24 Hours left
The Partridges were kind enough to join us last night for dinner and such a historical election night. What excitement, no matter who you voted for. At this point, it's time to pray that our President Elect Obama will live up to his campaign promises and look to God as his ruler. And I am super impressed that so many people I know made educated decisions yesterday, and no matter how they chose to vote, they did the research and were satisfied with their choices.
Back to the fast, I just keep being reminded that it's not that hard to make good food that is Wilson approved. For the last year, we have just always made him something else, but we can make him food that is safe and tastes excellent. This is opening up our world greatly, and gives us a greater sense of family unity. We were heading to a play date yesterday, and I ran into the grocery to grab a few things for our lunch, and was amazed at all of the options I had! I know it is limiting in a lot of ways, but I'm realizing that this is a great opportunity for us to find new foods and recipes, as well as our friends and family to understand us better.
I also have a request of everyone who has participated in ANY way this week, please write Wilson a letter. I am making a scrapbook for him of this time, and I would like to have letters from everyone who is doing this, just so he knows how loved he is. Even if you don't know us, please send something to theroblings
Thanks, Wilsonsmom
Monday, November 3, 2008
Day Three, early
Here is what God is teaching me so far through this fast; I am not insignificant, nor is my family. Sometimes I just feel so small in this world, like I am going to be swallowed alive. I just go about my life, but I realize many many people have way bigger problems than mine. I have a hubby that loves me, a monster that thinks I'm the coolest mama ever (for now anyway,) a job, house, etc. Why could God spend time worrying about us, just because Wilson can't eat some food? Then I am reminded that even the smallest problem, God wants to fix it for me, He wants me to surrender it, He wants me to let HIM work it out and not take it on myself. So this is what I am doing. This fast and the large number of people participating reminds me that we aren't insignificant, that God will use my friends, family, etc. to change the world. He took time out to look at us and give us this opportunity to come together as one flesh and sacrifice for my son's health. I'm just not sure I can tell you what this means to me.
I am also learning that it isn't that difficult to make food Wilson friendly. For the last year or so, we have been making two dinners every night. While it isn't super inconvenient, it does take up more time. But there are great recipes that my son can have, and they taste great. This can help us in the future for parties, family functions, and even just dinners so he doesn't feel excluded. And we can feel closer to him; understanding exactly what he tastes, feels, etc will help us to know him better and to be better parents.
I have also discovered that I LOVE cheese. I genuinely do not like salads without it. I don't have to have a ton, but I really like cheese on most foods I eat. It's a weird thing, I know, but I miss my cheese. Thursday after his test, I will probably eat a pound (or a slice.)
An update on Wilson as well, he did wonderfully on Halloween. He was the best Superman in the history of the world, and we successfully traded his candy with no tension. We also had no breakouts, but are now off all allergy medication, and boy can we tell. He is snotty, cranky, and you can tell he just doesn't feel well. It started within 12 hours of when he was supposed to recieve the dose, and unfortunately the time change isn't helping. So please add to your prayers his safety and health this week while off all the meds. Moms worry, even if they've surrendered the illness to God.
Blessings, wilsonsmom