Monday, May 18, 2009

This week is National Eosinophil Awareness week!!




Hi guys! It is Anjeanette here.

I wanted you to know that this is the second National Eosinophil Awareness week right now. It is the third week in May every year. My three year old was just diagnosed in January with Eosiniphilic Esophagitus.

Most of my creative genius (if you will…I would like to think it is creative genius but really it is probably something wrong with me about not being able to settle my mind…let’s call it creative genius though ok?) happens while I sleep. I go to bed with an idea on my mind and I dream about it. I think about whatever it is for days or years before I ever execute it. Usually I have thought through the whole project so it usually comes together fairly easily. I’ve been thinking and thinking about what I can do for National Eosinophil Awareness week. For Autism Awareness day, I made an awesome puzzle broach. Puzzle pieces are an icon or mascot if you will for Autism Awareness. As far as I know, there isn’t any object like that for Eosinophil Awareness. So what would I make that would interest my 67 followers. (Thank you so much by the way for being a follower of ours. You have no idea how excited we get when we get a new follower.) I did a post called Cake for an Eosinophil. Cake for an Eosinophil I had someone comment that she was surprised to see eosinophil on a craft blog. I’m guessing though that we don’t have a lot of readers that have children with Eosinophilic disorders. So an IV pole organizer tutorial may not help anyone but myself. I did by the way make an IV pole organizer to hold our stethoscope, syringe and tape with a few pockets. The IV pole gets messy with all the things we need for feedings.

I thought about making some homemade barf bags like the ones we got in the hospital. I still may make some for myself using a small embroidery hoop and double up some plastic bags inside. I wasn't sure how often your children throw up so I wasn't sure that it would be all that useful to you. I also thought about upcycling some IV bags that were for a different pump and making them into cold water bottles with a cozy and everything. But I’m guessing most of you don’t have extra IV bags laying around either.

I couldn’t think of a craft to make and share with you that would do anything for awareness. But I wanted to do something. What else can I do? I have a voice. As hard as we have tried to keep our kid’s pictures from this blog, I can’t think of any other way than to share some pictures of son to encourage awareness. So here I am.

So many times in the past, I’ve looked at people with struggles in their lives and thought and even said out loud “I could never do that” or “I don’t know how you do all that”. For example, my SIL Katrina and my sweet brother have a son with Autism. For years Katrina has made his food from scratch using all kinds of crazy flours and ingredients. But now I have a new perspective on it all. I am not a super Mom because of what I do for my son. I’m just his mom. These are his needs and I do it because I’m his Mom. I no longer wonder how people do it all. They do it because that is where they are and what they need to do.
I thought that by sharing our journey with you, hopefully #1 you will be a little more educated and #2 hopefully you will be a little more empathetic (NOT SYMPATHETIC) to someone a little different from you.

What the heck are you even talking about Anjeanette? My son has EE, eosinophilic esophagitus. I think the easiest way to explain it is to compare it to asthma. Asthma is an allergy in your lungs. EE is a really bad food allergy in your esophagus.
My son was always complaining about having a belly ache. It hurt before he ate, while he was eating and after he ate. We knew he was allergic to cows milk because when he was about 3 months old, I wanted to get out with some friends for a few hours. We gave him a formula bottle. It did not go well. He threw up for 24 hours straight. So I nursed on. He was a little fidgety when he was a baby and liked to sleep propped up. For about the first 5 months he slept in his car seat or swing. He was on Soy formula from the age of one to two. We asked and asked the Doctors what was up and they just said he was sensitive. But when he started really talking, he was always telling me his belly ached.
We went to see an allergist. We did RAST testing which is a blood test that tells you if you have immediate reactions to foods. Which is good to know, but not totally helpful in diagnosing EE. We had him tested on his back with the poke or prick test. They poked the heck out of his back to see what he was allergic to. It was crazy. There were more things he was allergic to than things he wasn't. Then we did patch tests.They take food and make pastes out of them. They put them in these little *cups* that have metal rings around them. Then they apply the patches to his back.
They pretty much taped his whole back up to make sure the patches stay in place. Then they wait.

We went back in 48 hours and the removed the patches. They checked for reactions and we came back after 72 hours to check for more reactions. Again, he was allergic to so many things.

After the allergist, we went to see a pediatric GI. We tried changing his diet. We tried a few things and still nothing made it better. Finally we were able to have him scoped. They did biopsies of the inside of his digestive system. It was clear from the scope that he had EE. His esophagus was totally swollen and the tell-tale signs of EE, the white cells, were visibly present.
So we have to take out all the foods that my son is allergic to out of his diet. We put him on an elemental formula. Which is basically a very broken down formula. They break it down to an amino acid. The more broken down they make the formula, the less palatable it becomes. We struggled at first because my son would not drink it. So we got the ng tube. Here he was waiting to have the ng tube put in.
It is a feeding tube through his nose. It was really hard to switch from eating normal food to nothing but liquid through his nose. So we went over his allergy testing with the nutritionist and came up with Sweet potatoes and watermelon for him to eat. Basically what we are doing is trying to eliminate the eosinophils completely by taking out any foods he is allergic to. Then the plan is to reintroduce foods one at a time based on his allergy testing. Food trials go something like this, after a clean scope, meaning no eosinophils are found, you introduce your chosen food and try him out on it. If he does well, you can introduce another and another. Usually it is about one new food a month. Once the food trial is over…we will have him scoped and biopsied again to see if the eosinophils are still present. If they are, we know he is allergic to the food.

The ng tube was unpleasant to say the least. This is the set up for changing out the tube. They get dirty and just yucky and you have to change them. We always did it as a team. One time Katrina had to help me because my husband wasn't there. We would have to wrap him in a blanket so that he couldn't fight us too much. We would measure the tube for the length. You quickly pull the old one and then quickly put the new one in. There is a stiff wire in the new tube which gives it some shape to help get it down. Then you pull the wire out and tape it up. The ng tube made things tricky. Bath time was interesting because of the tube. We would clip the end of the tube to his short hair and try to keep it out of the water. But ultimately we ended up taking a clothes pin and wrapping it up and clipping it. Other things that were unpleasant about the ng tube were things like getting a stomach bug and throwing up. He would throw the tube up too. In one week, we had to replace his tube 6 times. One of those times Katrina had to help me. It was not a fun task.

Kids are mean. They would come up to him and try to pull at his tube. Or they would say things like "What is wrong with you?" They would stare at him and follow him around. His big brother was his best ally. He would set kids straight and tell them there was nothing wrong with him, he was just allergic to food.

He gets hooked up to his pump three or four times during the day and then for 10 hours overnight. We mix the formula just like you do for babies and put it in the IV bag. We hook it up to the pump. Then we check him and hook him up. He pulls the pole around with him like it is another appendage. He can pull the pole with is foot while his hands are full of toys. He is very careful about his tube.

He got a stomach bug. Everyone gets them. He threw up for days it seemed. Finally he started throwing up blood. Off to the Children's Hospital. It was over Easter weekend. This is how we spent our Easter.

He had thrown up so much from a regular stomach bug, that it bothered his esophagus so much he was throwing up blood. It was shortly after his last batch of patch testing. You can see some of the rings where he had a reaction still on his back.

A simple stomach bug is sometimes just too much for kids with EE.

Monday was the day for g-tube placement. It was a tough decision to make. Believe me, we struggled coming to this. As long as they were going to put him under and be in there already...and since we know and accept that this is going to be a long road, we opted to have the g-tube placed at the same time as his scopes.
This isn't something he is likely to grow out of. It is a hard decision to make and each family decides what the right path is for their family. We know this is going to be a long road. After his week and a half of a stomach bug and throwing his tube up so much, we were firm in our choice to get the g-tube.

Something I think people don't realize is that we have thought through all the what ifs and how abouts. We have researched it and gone to support group meetings and talked about it. We are not taking any of this lightly. This is our son and we adore him. Often people try to make suggestions as if we haven't thought of this or that. But usually their suggestions are so not right and it is clear they don't understand what is going on. That gets kind of frustrating because we aren't jumping into anything. We have agonized over every choice we have made. But the end result we want our son to be not sick and not hurt. It is hard to see your child in a hospital because he is sick.


It is hard to make a choice to put something fairly permanent, in your child.


But for us, this is the only way to help make our son not sick. In a few weeks he will be able to take swimming lessons just like his brother. He will be going to preschool in the fall and won't have the pesky ng-tube taped to his face for all the other kids to stare at. He will be able to take a shower. We are really excited about the lifestyle change he will have now that he has a g-tube and not an ng-tube.

He is not his tube or his diagnosis. He is a whole person. He has crazy energy just like his dad, and is stubborn and set in his ways like his Mom. He is a younger brother, and a cousin and grandson and great grandson. He loves music and playing with his brother. He is a fierce kick ball player and is not afraid of a ball or running or jumping. He is 100% all boy with their crazy energy and sweet ways.He loves and cries just like you do.

So much of our culture is based around food. Holy cow! Our Roots and Wings Co family is huge into food. Our celebrations traditionally revolve around food. We celebrate marked occasions like birthdays with food. Aside from people being hurtful about his tube, we struggle with the whole food thing. His diagnosis came right before his 3rd birthday. He knew he was supposed to get a cake for his birthday. That is why I came up with the cake for an eosinophil. He HAD to have a cake. We did his party at the zoo with his best friend in the world because I wanted to shake up the whole typical birthday party and all the expectations that come with it. It is so hard to go through his day to day and not eat more than watermelon and sweet potatoes. He gets no cake, or candy, or fruit, or cereal. He loves to help me bake and always asks to smell everything. He can have all the water and ice he wants. We had to get him a snow cone maker so he can have something fun. Sometimes you can see his mouth move when he watches someone eating. He has taken bites of Chapstick because he so badly wants to eat and he thought it smelled good. Talk about heartbreaking!

The other thing I want to bring awareness to is how to deal with a friend or neighbor that has something new and different going on with them. This is a big thing for me. Because without my experience I would not have understood this at all. But your friends or neighbor still needs you as a friend. Don’t wait to call them because you want them to have time to deal with xyz. Call them just the same as you would before. Put the ball in their court to accept your invitation to whatever event or thing you would normally invite them to. Don’t just exclude them because you assume it would be too difficult. We are learning to bring things like my art totes to events. He will draw his heart away. He would rather be at an event, than stay home because of his EE.


Something pretty exciting is Disney's own sweetheart Demi Lovato is the honorary embassador to APFED which is one of the groups trying to raise awareness and funds for research for curing this thing we call EE.

If you go to youtube and do a search for Eosinophil you come up with the saddest videos of children that can't eat. It is heartbreaking not being able to do the most simple thing for your child by feeding them food just like everyone else.

If you made it through my post to this part, thank you so much for your time. It is something that is very near and dear to our hearts. The next time you see someone different from yourself, don't quickly turn away, don't ask "what is wrong" with them. Your approach and the way you word something makes a whole world of difference. Instead give them a smile (not out of pitty). If you have time and want to, ask "why they have..." a tube or wheelchair or whatever it is that is different about them. We are all still people afterall.

***ETA
Thanks for all the nice comments.

You can learn more about Eosinophilic Diseases at APFED. You can donate there as well as CURED. Each family has choices to make about how to treat and manage their child's Eosinophilic Diseases. There are no solid answers that fit everyone. Some people decide to treat with drugs like steriods. Some people decide to eliminate the offending foods. While he is small and we are still able to make his decisions, we are choosing to remove the foods that are making him sick. But that doesn't mean that is the only right choice...it is just our choice.

We do have a different pump than the one in the picture. That was the second pump we had. We are now on our third pump which is a Zevex Infinity. We love it. He has a little back pack that he wears with it in it. We also went through three back packs to get to the ultra mini (or something like that).

Thanks again for reading and a huge thanks for your kind comments;)
Anjeanette

38 comments:

Deb said...

All I can say is that I love you guys! Your blog is awesome. You share so much about your lives and encourage us all to be more tolerant and more loving. Hugs and prayers to your families. Best of luck to your little man as he ventures into his new life with the g-tube. Thank you for sharing so much and for helping me realize that loving life is more important than just living life! Have a great week!

Jenn's Crafty World said...

Thank you.

RootsAndWingsCo said...

Love the post Anjeanette.

You know even us well meaning family members get it wrong some times, even when we don't mean to.

It is hard because we all have higher expectations of our families for understanding. While the child is inside our lives, we don't live with them and there is that separation. As family memebers, be it aunt, uncles, grandparents, friends that have been adopted (essentially) into the family, we should try a little harder to walk in their shoes. To learn more than the average person about what is affecting our loved ones. Only then can we hope to understand to a point of being useful. As the parent, we have to understand that no one can understand as fully as we do.

With food allergies, it makes it hard to leave your child in just anyones care. You have to be comfortable that your child won't be given and offending food. Gluten and dairy are in most foods in whole or in part. Something as simple as margarine isn't usually safe for people with milk allergies. Most of them contain whey or casien. Both are milk protiens.

Early on my son was given red vines at summer camp. He cried all night long because they didn't look at the label. Wheat was the first item on the list. It was still the early days, but it made me not trust anyone completely. We don't eat out because of it.

Even if us well meaning family members don't get it right all the time, we love you and offer our friendship always and every day that you need it. Having a child with a something that makes them different is isolating. I have one fabulous friend a handful of people that I am friendly with (but never end up doing anything with them)and I have my family and that is it. You will find out who you can count on and who you can't. Maybe that is the hardest part about it all.

You are right, we aren't Super Moms, we are just Good Moms. Maybe even Great Moms, but I feel that you and I are just doing what we have to do for our kids. Though I am learning to just accept the compliment and say "thanks, that means a lot to me." It means so much because you also get the flip side where people judge you publicly for what you "are or aren't" doing for or about your child. If only they knew.

So I think this is a Great post!!

Katrina

michellejohnnie said...

My hearts aches for your family and especially your son. Eating is a major part of my life. When I was a SPED teacher, I had a student with a g-tube. He could eat a few little things and we always tried to accomoodate him with something besides food when we were having parties and such. Good luck in the battle! Thank you for assisting all of us in being more aware.

RootsAndWingsCo said...

I love this post! I'm glad that we(you) can at least get the word out. Plus, all of us can use help in knowing how to deal with people that aren't in the same situation as ours. It has been interesting being just a bystander to both you and Katrina. While, I am fiercely protective of both of your boys, I still don't have all the information (and of course I certainly don't have to deal with what you guys do on a day to day basis-I've got the easy job of Aunt-or Tante). So, even I don't always know the right way to act or the right thing to say. I try to do it right,and think I've done all right. However, what has been interesting is in how to educate my children. I had to think through what to say to my kids when we were visiting you guys the night your Son came home from the hospital last week. I did not want them to shy away from him. However, I wasn't sure if your Son was up to talking about it, and I knew they needed to be gentle with him. Awareness for our children, I believe, is so huge. Then they can be more empathetic as adults and the cycle will continue. I love you guys and your fantastic children! I do think you guys are both super Moms. Not all Moms take the challenge and deal with it the way you guys have done. Yes, you do it because you are the Mom. However, not all Mom's do it with such passion, enduring strength, or love! I am so thankful my Nephews have you guys for their Mom's so that they are having the best lives they possibly can. Neither of you will settle for anything less! (Gotta include my BFF to the list of amazing Mom's in dealing with things with their children). All 3 of you truly do inspire me and I love you!

Rebecca

RootsAndWingsCo said...

One more thing. Now that the cat's out of the bag, aren't Anjeanette's boys gorgeous?! Hard to not post pictures of those cuties, hu!?

Rebecca

The Harris Family said...

Thank you for sharing your story and making us more aware of the struggles these little kids go through.

Myrnie said...

Thank you for sharing your story- I've never known anyone with Eosinophil. I try to help my children understand what they see- I ask my oldest (she's almost 4) not to point, but always try to explain.

erika said...

What a great post! This is such a great way to get the word out. Love you!

MammaDucky said...

Wow, thanks for sharing. Your boys are SOOOOo handsome, by the way! I had no idea about Eosiniphilic Esophagitus. I truly hope the G-tube leads to a better, if not easier life for your son. Kids can be so cruel and that breaks my heart. Hugs to you and your son!

Susie from Bienvenue said...

Who I see in those pictures are one precious little normal boy. He just eats in a different way. He is blessed to have one awesome Momma. He has a smile that just melts your heart. He can become anything his heart leads him. I believe you have one special little boy and special in a way that should make you proud! My oldest daughter takes shots every week just so she can breath. She has had her share of allergies but in a whole different way. It's not easy for them or for us but you know what..... we keep on going. I love your spirit and your love just overflows for him. Thank you for sharing your story. I am glad to say I have learned something new today. God bless y'all~

Mama King said...

Thank you! What beautiful, happy boys you have! I wish the best for you and for family. Thank you for sharing your story I learned a lot about EE.

A side note, I think the embroidery hoop / plastic bag idea is genius.

bubbachenille said...

What a beautiful little boy, who by the way probably copes better with all this than his mother ! Children are so resilient. I did read your whole post and you are such a stong person and and awesome mother..
I didn't know about this disease before reading your post, thanks for informing me in such a generous way.
Miriam

Katherine Marie! said...

Thank you for sharing this... my heartfelt prayers go out to you in this journey. GOD BLESS and LOTS of hugs!!

twinklescrapbooks said...

You have such a tough l'il guy!!! Hugs to him!!! Thank you for talking about Eosinophil--I never knew about it before today. Thank you for educating me on it. Thank you for sharing a part of your life with us, your readers. :)
tina

Amanda said...

Thank you for being brave enough to share this with those of us who are passing by. What a wonderful Mom you are.

Crafty Mom said...

Thank you SO much for raising awareness of EE and eos disorders. My daughter had severe reflux as a baby and continued to have reflux well into toddlerhood (long after most babies outgrow it). She was dx with food allergies and ultimately we ended up seeing a GI who did a scope and took biopsies for EE. She was not diagnosed with EE but we were given a treatment plan for her reflux. Through this I learned a lot about EE and pondered all that the possible diagnosis brings with it. At the same time that I was going through all of this, my friend's son was diagnosed with EE.

A HUGE source of support as we went through that journey and as we continue to manage my daughter's food allergies is an on-line community and non-profit organization, KidsWithFoodAllergies.org. One of the many forums that KFA offers is a forum dedicated to discussions for parents of children with eos disorders. I can't imagine raising a child with food allergies without the support of Kids With Food Allergies. Stop by and check it out!

Mindy Callahan said...

What an awesome post!!! Thank you from one EE mom to another :)

4 is crazy said...

Thank you for your post. My daughter, almost 4, is suspected of having EE also.

Cristi said...

I heard about your post from my KFA friend Crafty Mama (www.kidswithfoodallergies.org). Although my youngest daughter doesn't have known food allergies or EE, she's completely no food for other reasons. You did a wonderful job in your post touching on what a challenge life is for a preschooler with food restrictions. Thank you!

You showed a picture of his IV pole and feeding pump. Have you ever seen the smaller feeding pumps? My dd has been wearing her feeding pump in a backpack since she was less than two years old. She was hooked up most all day (and night), but it didn't slow her down a bit.

sshoenninger said...

What a beautiful post. Thanks for putting your hansom boys out there to raise awareness for EE. I think you did an amazing job giving a window into the struggles our kids have. My son is 3 ½ and has had his diagnosis for about a year and a half. It breaks my heart daily when I have to tell him that he can’t have the same foods that his sister, friends, classmates are eating because it might make his tummy hurt. I have spent countless hours on the internet and in the kitchen trying to find acceptable alternatives. My son has struggled since about 9mtn old to keep his weight on the chart and were supplementing with elemental formula to keep is weight up. We are lucky that he would actually drink the formula and we did not have to go with the NG. We were recently able to get a clear scope by going top 8 free plus a few extras. We are trudging through the food trials now trying to add things back and expand his diet. I too was so excited to see Demi Lovato as an ambassador for APFED. I am also looking forward to going to the Eos Connection this for the first time this summer to hopefully learn some more and meet some other families (in person) who are living with this diagnosis. Thanks again for getting the information out there.

Amazing Racer said...

Yay for awareness. Your little guy is simply precious!

laurel said...

Great post! My daughter went down the elemental formula/pediGI/scope path and turned out to not have EE (at least it didn't show up on her scope with a limited diet), but I sure understand how hard it is to deal with food allergies in a world where food is the center of social activities. The G-tube decision sounds like a great one fore you guys, I'm sure you won't regret it!

I would also encourage you to join the kids with food allergies web site. there are so many wonderful, informative people there who reall GET IT! it's amazing to have such a supportive community. you should be able to see the main forum by registering (w/o paying the membership fee) and I believe there are low income waivers or scholarships if needed. I have found the support, community and recipies to be well worth the $. you wouldn't believe the recipies people can come up with when working with only one or two ingredients!

Daisydaze said...

Your little boy is adorable...and so lucky to have such a great Mom. My DD is grown; but, still deals with asthma, which has caused many a sleepless night for us all. People can make cruel remarks; my hope is that they are out of ignorance (which can be cured with knowledge) rather than just rudeness (which tends to be permanent!) My heart and prayers go out for all of you.

Infertility Goddess said...

What a great mother you are. What an incredible, amazing, miraculous boy you have.

Thank you for sharing your story.
JDW

LollyChops said...

Hi Anjeanette... I just wanted to let you know that I just came across this post and it really touched me.

Thanks for explaining everything so well and sharing everything your family is going through.

It sounds like your son could not have better parents and older brother.

Big HUGS!

Jedda said...

Thank you so much for this post. What a beautiful mother and son you are! We are struggling with identifying allergies right now for my son. I appreciate so much you sharing your story.

sassypriscilla said...

Aw, man. I can hardly bear to think of our little ones who can't do what others can. My little boy had 4 heart surgeries and the fears we have on a daily basis is overwhelming. I like how you put things about doing what you simply because you are your child's mom and that is what you are supposed to do. Great post.

Michelle said...

Oh my goodness...I just found your blog and I want to say my thoughts and prayers are with your family.

Becky Gonce said...

I just stumbled on your blog and wow.. I can't imagine what you go thru. But so glad that kids are so resiliant. He is such a cutie in all the pictures and looks quite happy with life. Keep up the good work!

Emmy said...

I also just found your blog, and want to congratulate you on the way you are handling your son's EE. I have a child who has celiac {Gluten Intolerance}he is grown now and has a newborn of his own, and I understand the frustration of not being able to have cake and ice cream etc. His difference from other children was a huge belly like a starving child- not an NG tube, but as he looked 'different' from his brothers he did have to deal with those children and adults who didn't know.

You are doing a wonderful job with your beautiful boy. May he always love life as much as he seems to now- he is a very lucky boy to have such an awesome mama.

Bonnie said...

Bless you for sharing your story. My grandson has severe allergies and can eat 6 foods. He is 4 years old. When I saw your snow cone cup, I got a lump in my throat. Last summer I bought the same set so he could have something special. We are looking into a cotton candy machine. He can have sugar. So white cotton candy treat for his birthday. No cake for this little guy either. All children with allergy issues need to be able to love their life, not just exist.

Anji* said...

I just read this post via your birthday parties post. Very moving, your son is so cute and I really do empathise with you. We have various skin troubles with our two kids, and my daughter has had mild food allergies. I am totally with you in that we are all built different, and just because we are different doesn't mean there is something 'wrong' with us. I hate all the labels. I hope your son is doing well and enjoying school and life in general :)

Susan said...

Thank you for sharing your son's and family's story. This was new information to me and honestly brought tears to my eyes. Your story brought awareness and your message was heard. Thank you for the reminder to be kind, be human and reach out. I'm leaving more educated and more empathetic.

Leslie @ Farm Fresh Fun said...

Gorgeous little man you have! I adore your blog and read this entire post... Thank you for ALL you share here! Both my kids had many food issues and restricted diets when younger. I breastfed on the allergen free diet for a long time. Even now I myself am gluten free and watch my kids diets/tummies carefully... It's very challenging and I truly do empathize. You're a super mom ~ enjoy your super kids!
(((hugs)))
Leslie

Rebekah said...

I know this is 2 years later, but I just wanted to say, "Thanks for this post." I had no idea what this was. Hope you and your little ones are doing well. :)

anachronist said...

Late since I just today found your blog. Thanks so much for this posting.
Having myself some quite limiting allergies (soy and celery and several spices, almost all fruit and some vital meds like several antibiotics)I know how challenging a normal life can be and having people/kids tease one about peculiarities one might display (being on the Autism spectrum)were and are not easy either.
So I hope, that the awareness you raise with your openness will help make people more open to the diversity around them.

Marcelle Jeff and Vince said...

Hi My 3 year old has Autism and it's my birthday today and i had a crappy morning. Your story lifted my spirit today. i know what you mean about people asking "what's wrong with you?"
I love what you wrote!!! It helped me identify how i feel about my boy. I too see him as my boy and not as Autism. It's hard because i do all the work with him. I feel alone and unhelped.
I have lots of State help and support but not with the knowledge of Autism and how to apply it. My family just doesn't seem to get it the way i do. They love him, don't get me wrong. They treat him well, but no one understands why what the therapists say is important.
Any way...
You really made my day! Tear, tear.
My heart goes out to anyone with a special needs kid.
I used to be afraid of them and I was unwilling to treat them like people but now i remember that there are people behind the tubes, behaviors and whatever makes them "look" different.
Keep up the good work. You are a phenomenal mom. You are changing your son's life!!!! one day at a time. When he reads this blog someday and fully understands it you will be amazed at how grateful he will be :)
~Marcelle