Well, he did it!

Ben crawled. Yep. He crawled ALL BY HIMSELF. Out of the blue during an ordinary evening, without any encouragment, my husband and I watched Ben get himself up on all fours and crawl toward us. Matt and I both had tears in our eyes. He only made it a few feet, but it was like watching a miracle unfold. We called the Grandparents. Posted the news on Facebook. We hugged both kids and celebrated! Ben's poor little muscles are so weak...yet he keeps trying and trying, and now he's on his way to a new level of independence. I'm so proud of him... and a little humbled by his consistently cheerful nature and unwavering determination.

In other news, we discovered he is also allergic to green peas. Green peas??!! Yes. It's true. We saw him break out in hives after eating some peas. We gave him Benedryl, not fully understanding what he was reacting to. The next evening, we tried peas again, and.... Tah Dah!!! He immediately broke out in an itchy rash again. After researching this online, I found that kids with peanut allergies are often also allergic to peas - another member of the legume family. I'll add that to my list. Before having Ben, I never knew I would someday view my kitchen as a war zone - a dangerous place full of life-threatening land-mines in the form of everyday peas and wheat bread.

Today, though, I'm putting all my worries aside and just soaking in the joy of the moment. Ben has crawled. He will continue to get better and stronger. What a kid. (And what a great big sister he has, as well!)

A tasty tidbit.

The kiddos have been keeping me very busy lately. I've had a hard time finding even a few minutes to blog, but I'm going to try to type quickly this morning.

Ben has been amazing me in the past few weeks. He's been babbling more and more, and now officially says, "MaMa" at least a hundred times a day. His favorite activity right now is playing the piano. He thinks he has a true talent!

Our OT has given the thumbs up to start textured foods again. Ben had a clear allergic reaction to Saltine crackers...so he is OFF the wheat and soy entirely again. The poor little guy has gotten very bored with his mushy diet, and has started refusing to eat a bit. We have been in search of safe and tastey tidbits for him, and came across Sunbutter (made from sunflower seeds) as a replacement for our beloved peanut butter, and Ben luh-uh-uhvs it! (And so do I) So yesterday, he had spoonful of sunbutter and some rice chex cereal for breakfast. He smiled from EAR to EAR... so glad to be eating real food again.

Other news.... the PT wants Ben to get AFO's (custom made braces for his little feet and ankles).... we're due for another MRI.... we're due for another swallow study.... we're doing all we can to avoid bringing the flu into Ben's world....

It's time for breakfast now... so I'd better go. I'm seeing two hungry children and a mommy who needs more coffee.

A change of plans...

OK. No water therapy today. Ben has decided to have a cold instead. Woke up with lots of gooey goo in his nose and a little gagging cough. Should be a fun day!!

Ben Ben Ben

Not too much really happening lately. Ben's just plugging along on every front. Knock on wood, he's been quite healthy and happy.

He is getting closer and closer to crawling... but he LOVES to walk now (obviously with me holding his hands). He'll do it all day long if he can wrangle someone into helping him. He's improving at his steps and balance, so that's also positive.

Increasingly, he is getting very frustrated when he can't communicate his wants and needs. When this happens, he just screams. I mean, he just SCREAMS. It can be frustrating, heartbreaking, or terrifying, depending on the moment. I'm really hoping that the speech therapy will provide us some resources to improve this.

So, anyway, we're off to pool-based therapy today. Splish splash.

Another bump in the road

Just a few short hours after my last happy post, Ben unleashed with gushy pukies and poopies all afternoon. I think it's just a common kind of illness, and nothing related to Ben's particular medical issues. I hope that's the case... and I hope it passes quickly. Mommy needs her rest.

Growing, growing, growing.

By following all the doctors' recommendations about Ben's allergies and his swallowing problems, Ben has been eating like an Olympian for the past month. He has gained just about two pounds in two months, and is getting stronger with every pound! Learning how to cook foods that are allergen-free and which also puree easily has not been too bad, and the benefits are well worth the work. It is time-consuming, of course... but I'm learning how to fit everything in my daily routine.

With the vomiting completely stopped, Ben has been SO much happier and his eczema has been very well-controlled as a bonus. What a relief!

Now, we will just continue to plug along with the therapy and get this boy crawling. He wants to be independent so badly... and my back wants him to be independent, too.

Just another day

Today was just a typical day around here. Sarah had school and dance class. Ben had speech therapy. Nothing new. Nothing scary. Good day, I guess.

playground meltdown

It's been a hard week for me. I tried to take Sarah and Ben to the park this week, and I realized that I probably won't be able to do that alone again - at least not for a long time. Sarah is strong and independent and wants to test her own strength by trying new things on the playground. Ben is also independent, but still doesn't even have the strength to crawl. He didn't want to be held. He didn't want to be in the stroller. He wanted to be where all the other kids were... but how? There were many other kids younger than Ben who were running and playing with their siblings. There I was, breaking my back trying to help his wobbly little self stand and watch everyone else...while trying to keep Sarah safe and still let her enjoy herself. I was never able to satisfy either of the kids, and so we had to leave - Sarah and Ben both crying - me feeling overwhelmed.

The whole experience made me feel very sad, and it's been very hard to pull myself together. I find that my acceptance of Ben's issues comes and goes like the tide. Just when I think I've got it... it washes away and I'm left feeling defeated and flattened. As time passes, and Ben falls further and further behind, it is becoming harder and harder to bridge the gap between his needs and Sarah's needs. My needs are often left out of the mix completely.

I know that I have to push on and continue to try to focus on the positive...the successes...stay in the moment. Sometimes, though, the moments are just harder than I wish they were.

In the thick of it.

Here we are starting another week. Trying to find the energy to cope. The main task for this week is to determine a safe and allergen-free thickener for Ben's liquids. It's a long story...but so far we have eliminated 5 options, and will have to experiment with a 6th. Ugh.

Haven't stopped blogging...

I haven't stopped blogging, I've just been MIA for awhile. August has been a VERY busy month for our family. All in all, Ben is doing GREAT. His allergist has advised us to avoid all nuts and eggs, and so far, so good.

Ben's strength is increasing. His weight is increasing. His babbling is increasing. Yeah, Ben!

Last week I attended a CEU for my license, which was the use of Zen meditation in treating anxiety disorders. It was a wonderful class, and I've been incorporating the techniques in my own "parental anxiety". I'm planning to pick back up on the regular blogging this week, since we will be finished with our summer travels, and little miss Sarah will be back in school.

The rest of the day...

Well, Ben kept his food down for the rest of the day, though it seems he has developed a cough. Something to keep an eye on, as usual.

He will be seeing his allergist on Thursday, and I'm excited to get some additional direction on all of the food allergies.

Today, he saw his speech therapist for the first session. She commented on how great Ben is doing. She was happy to see that he closes his lips around a spoon when he eats. In relation to some of her other patients, she remarked that Ben is really strong and has a lot going for him. I cheered with him that someone actually called him "strong". She gave us a few new things to work on now... in between the thousand things we were already working on. Overall, though, I think the speech therapy will be fun. The real goal of therapy at this point is to strengthen his throat, tongue, and mouth so that he can stop aspirating and begin to eat more food.

Speaking of food... following Ben's diet is PAINFUL for me so far. I'm trying, but really I'm only averaging two out of three meals a day that have been free of all of the "forbidden four" (wheat,eggs,soy,peanuts). I need some free time to really cook some meals ahead. Considering I've eaten peanut butter on wheat toast for breakfast most days for the past few years, it's a big change to do all at once. The brown rice crackers are not too bad... but really not too good, either!

The dry spell has ended

Darn. After two comfortable weeks, Benner threw up his whole bottle this morning. Is it a fluke or the beginning of another round of wet yucky days? Guess only time will tell.

Allergy diet - Day 3

It's been three days for me following Ben's "allergen free" diet. I have slipped and had a couple of forbidden foods myself, but mostly I've been trying to make the right substitutions. On the first day of the diet, I attended a party where I was so proud of myself for finding foods with the right ingredients for dinner. Later, however, I was too weak to decline the homemade orange/pineapple cake - made with wheat flour and eggs, of course. I've never been a smoker, but I imagine that quitting smoking could not be worse than giving up wheat in my diet.

I've absolutely kept Ben free of the trouble foods. Tomorrow, I'm making a trip to the health food store to get the ingredients to do some of the baked sweet treats in my new cookbooks. I wonder how delicious barley flour and egg-substitute will taste...

As for Ben, he has been enjoying his fresh cooked meals, and he is doing really well. Today he looked stronger than I've ever seen him. He was actually scooting himself forward on his tummy, instead of rolling to get to his toys. The biggest news -it has been over two weeks now since he has thrown up at all!!! Way to go, Ben!

Since Ben will grow up on this diet from such an early age, I know he'll never miss these foods he's not allowed to eat. For me, though, I've had a bit of sadness thinking of some of the things he'll never know... like my mom's homemade custard pie... or her Thanksgiving dressing. I actually got a little tearful thinking that Ben could never enjoy these foods... but then it dawned on me that Sarah is allowed to eat anything she wants and she won't touch either of those things! So, instead of feeling sad, I suppose my energy is much better spent learning to cook the allergen free organic buckwheat cherry pancakes in my new cookbook. Yum.

Just one example

One example of the crazy routine I have to follow for Benner.

Here is what feeding time looks like for Ben:
1. He should be bounced on a balance ball for about 5 minutes prior to feeding to help "turn on" his muscle tone.
2. He should be given some stimulation for his mouth and cheeks. I am supposed to use an electric toothbrush to vibrate along his cheeks and under his chin, and a little on his teeth and gums as well.
3. He should be given something cold. Before he is allowed to eat his true meal, he has to be fed at least a quarter cup of something very cold to help turn on his sensory perceptions. It's also helpful to use spoons that have been left in the freezer.
4. Because he is now restricted from eating solids that he can feed himself, I must give him a toy or something to occupy his hands to reduce his frustration of not feeding himself. (He is too jerky to self-feed the purees).
5. Now he is finally able to eat something - something that I have pre-cooked and hand-ground into a puree - and that does not contain any wheat, eggs, soy, or peanuts.
6. I'm supposed to carefully watch for any signs of aspiration... eye watering, runny nose... if there is any coughing I must stop feeding him that particular food completely for that session.
7. We must be certain that he remains upright now for at least 30 minutes so that he's less likely to experience any reflux.

I'm not complaining... but when Sarah was Ben's age, I could hand her a grilled cheese sandwich and a glass of milk.

Knowing what I know about kids like Ben, I'm mostly just thankful that he is able to eat at all, and that he's not hooked up to a feeding tube at this point. I will keep up with the wild routines as long as I have to. Sometimes when I think of all that's involved with Ben's daily routines, I want to hide my head in the sand... so I have to just take it minute by minute... and try to stay present... and try not to miss all the joy that comes along with all this craziness.

Diet starts today

I've spent the past week researching information about Ben's food allergies and trying to learn what to prepare and how to prepare it. He has not had any wheat, soy, eggs, or peanuts since his tests came back. Today, however, marks the first day for my one month trial to follow his diet as well.

I haven't even had breakfast yet, and already I've had to give up something... my regular coffee creamer. It contains soy. Dagnabit.

I believe that following Ben's diet is going to force me to learn to cook the recipes and become more personally aware of these food ingredients. No one likes bread more than I do...so I know giving up my Bread Company fix will force me to find alternatives that Ben can enjoy as well.

Ben's new allergy results have been somewhat hard for me to accept. Caring for Ben was already WAY more intensive than I'd like...but the added responsibility of cooking an entirely new way has felt really daunting to me....not to mention the worry of him encountering something dangerous and having a bad reaction.

For now, I guess the best thing to do is have another cup of strong black coffee...no cream, thanks.

Another puzzle to piece together

So...On Friday afternoon at 5pm, Ben's pulmonologist called with his allergy test results. The doctor started out by telling me that Ben is one of the most allergic patients he has ever seen. As it turns out, Ben is dangerously allergic to peanuts, eggs, wheat, and soy. He is also highly allergic to cats, dogs, tree pollen, grasses, dust mites, and weeds. He ALSO has some sensitivity to milk, corn, sesame, and shrimp. Yep. That sounds pretty bad to me.

OK. So, I now have to carry an epi-pen everywhere I go with Ben. The doctor advised that we MUST NOT allow Ben to eat peanuts, eggs, wheat, or soy... or he may go into anaphylactic shock. Since pretty much everything in our house contains one or more of those ingredients, I'm now starting the journey to learn a new way of cooking and eating. I've ordered the allergen-free whole foods cook books. I've thrown away all the peanut products. I've stocked up on oat flour. Ready. Set. Here I go.

Over the next month, my blogging will be dedicated to my task of learning this new diet, and trying to follow it right along with Ben. In reality, eliminating processed foods and cooking with only natural and organic ingredients will make us all healthier.... but oh....I already miss my peanut butter.

I once had a chiropractor convince me that my whole life would improve if I would just give up wheat...so I did...for four days. Now, I'm going to challenge myself to follow Ben's diet plan very strictly for the whole month of August. I believe this will help me learn about the foods and really try to learn the recipes, since I'll have to eat them too. I'm going to share it all here... the ups, the downs, and the painful cravings. If Ben can do it, then so can I. At least for one month, right??

No Angel-man here

Well, Ben's latest and greatest test results are in. The genetic testing has ruled-out Angelman Syndrome. Good news, I suppose. This is one more genetic disorder that Ben has avoided. He continues to stump the doctors. Next stop will be a pediatric geneticist.

Ben's swallow study showed us that he does aspirate liquid and food into his lungs while eating and drinking. We have some new steps to take to avoid this, and so far so good...it's been about a week. With a little help from Ben's nutritionist, and my new handy-dandy food grinder, I'm hoping to expand his diet and help him put on a little weight and build some muscle.

This will be a busy week for Ben. He will be seeing his eye surgeon tomorrow morning, to determine if he'll need a second eye surgery. Tomorrow afternoon, he'll have a meeting with the Early Intervention team to establish his goals for the next six months. (I'm pretty sure we're adding two new therapists to the team - water therapy and speech therapy.) Next, on Wednesday, he will see a new pediatric pulmonologist to check his lungs for any damage from the aspiration, the bouts of pneumonia, and all the interventions he received in the NICU. Then, Thursday and Friday are PT and OT sessions. Yes, there are a lot of people for Ben to charm this week.

In addition to all of his appointments, he is currently on a round of antibiotics, oral steroids, and inhaled steroids to fight off a respiratory infection that has made it's rounds in our family. Unfortunately for Ben, a virus that causes a little cold for most of us can land him in the hospital.

All the medical stuff aside, Ben's personality continues to grow and shine through more and more each day. He's babbling a lot more. He's trying SO hard to crawl. He is in general just the sweetest and happiest kid you could ever ask for. I find myself so grateful today to have two such amazing kids as Sarah and Ben.

The other Ben

I've been thinking a lot lately about my Great Aunt Bennie. We named baby Ben in honor of her. She died almost 10 years ago, though it seems like only yesterday. Now that I have my own little Bennie in the house, it's almost impossible not to think of her on a daily basis.

Aunt Ben was one of the most important and influencial people in my life. I suppose she sort of filled the role of a third grandmother to me... but she was truly more of a best girlfriend, in spite of the sixty or so years difference in our age.

I admired Aunt Ben for so many reasons. To start, she went to college when it wasn't common for a woman to do so, and she became a teacher - a special education teacher. She was married for over 70 years to my Great Uncle Govie. She was smart, kind, brave, faithful, loving, quick-witted, and funny. Throughout my highschool years, she and I would have long phone conversations, and if I was struggling with something in school - be it social or academic - she was certain to have a helpful answer.

Aunt Ben had only one child, a little boy named Paul. He died suddenly when he was 12 years old. She spoke of him rarely. Now being a mother myself, I can't imagine the sadness that must have always remained with her. When things with Ben get hard, I can't help but wish she were here to talk to now...her years of experience, wisdom, and love to share with me.

Knowing the dedication that Aunt Ben had for special needs children, it seems so ironic to me that her namesake is himself a special needs child. It also feels ironic that Ben is, in his own way, already a teacher just as Aunt Ben once was. While caring for baby Ben, he has taught me patience, courage, faith, and determination. He has taught me that smiles can be found when I least expect them. Joy can be found in the smallest victories. Hope isn't just a desperate wish from a sad heart, but instead it is a conscious decision to remain strong and remain open to the possibility for success and unexpected triumph.

Looking at both my children, I feel Aunt Ben's presence. When I think of her, I can imagine her cheering us on... offering supportive words... being in awe of Sarah, and being Ben's biggest fan. I'm so proud to have named my special boy after her, and I know that in spirit, she is quite proud as well. What a blessing for me to have the honor of knowing them both.

Forward motion

Today, Ben made some forward motion that resembled an attempt to crawl. He was sitting on the floor, and instead of falling backward and then rolling toward his toys, he pushed himself forward onto his hands and knees. He pretty quickly collapsed on his face, but, hey, it was an attempt! He really had a great overall day today. He ate a lot, and played a lot, and did not throw up AT ALL! Now, that's my boy!! Keep it up, Benner.

I'm holding onto a hope that Ben will be able to crawl by Christmas this year. I'm going to hold on to this intention in my mind, and work with him each day believing that this can - and will - happen. What a fantastic Christmas gift this could make!

Status Quo

Not much new to report in Ben-land. He's still wobbly. The frequency of his vomitting has decreased in the past month, but there have still been some unfortunate episodes. I've developed a sort of PTSD response to his coughs, as they are often the precurser to the big sloppy show. Fortunately, we finally have his swallow study scheduled, and I'm hoping that will offer some insight into his eating (and keeping it down) difficulties.

We've started the introduction of Kinesio tape, which is long bandage-like strips of tape running the length of Ben's spine, designed to help turn on his muscle tone. I don't know if it will help, but it's non-invasive and worth a try. It has caused quite a stir to friends and family who've wondered why Ben needs these huge BandAids.

Still awaiting some lingering test results. I'm growing tired of following up with the doctor's office staff who promise to call me back, but rarely do. Just one more thing on my expanding "to do" list. I find it hard to maintain motivation to keep hounding them, when I don't really believe that the answer will matter much.

So, that's it for now. Life goes on with Ben in his typical wiggly and giggly fashion.