A New Journey as well as a New Curriculum

It's been almost a year since I have written, but the time has come for me to begin blogging again and sharing about our new life.

I certainly have so much to tell you, but meantime, I will tell you what I can that won't take a million pages to post about. But those posts are coming soon, so not to worry...

In about a week or so, you will see this blog get a makeover, for Sweet B is no longer the baby who is pictured on the banner, OR you will see me start a completely new blog. The new blog design and topics will reflect our new lives. I had wanted to wait to do this particular blog post until I had written about the turns that our lives have taken in the last year, but those posts are going to take a while, and as the saying goes, "The show must go on!"

And what is this show you ask?....

Because of reasons which I won't explain in this post, Sweet B is in need a transitional kindergarten curriculum that not only teaches the academics necessary to flourish in kindergarten, but also teaches the whole child. She was set to go into kindergarten this year due to her age. Being born so early meant that it put her into kinder now instead of next year, unfortunately. After SO MUCH PRAYER and talking to people and listening to God, and other circumstances which I haven't shared yet (don't you just love it when people allude to things but then don't explain them?) she gets to have an extra year of transitional kindergarten, which is really just another name for preschool or Pre-K. I am doing a hybrid homeschool program through a public charter school. While they do provide the curriculum, I was drawn to Mother Goose Time curriculum because it teaches so much more than just academics. I was given the amazing God-given opportunity to blog for them and receive the curriculum in return.

I have an educational specialist whom I meet with every six weeks to provide proof that I'm indeed homeschooling. According to her, this year is  "gift" for Sweet B, and I might as well use the curriculum that does indeed feel like a gift!

I signed on with Mother Goose Time as a blog ambassador, and therefore will be sharing my experiences with this curriculum through this blog. I am SO EXCITED about this opportunity! The beginning of our new lives coupled with this curriculum has got me confident and looking forward to this year in ways that I haven't ever looked forward to something before.

This year Sweet B needs relaxation and time to teach herself the skills that will be necessary for living. (See how allusive I'm being...Isn't it driving you crazy??) She also needs to play a lot and learn at her own pace. She needs more than worksheet after worksheet. She needs extra practice with her fine motor skills, especially since that is her greatest struggle. And wait until you see the fine motor activities in this curriculum. I'm talking lots of gluing, cutting, coloring, beading, etc. She also needs gross motor activities being that her left side is weak due to her mild cerebral palsy diagnosis. I can't wait to tell you about Dance N Beats, a DVD, an add-on to the regular curriculum which teaches her 21 dance moves and features several cute songs (that she plays over and over and over and over). She most definitely needs bible study, which is also included as an add-on and doubles as teaching reading comprehension as well as fine motor skills through the crafts.

She loves this program. We've been doing it for a week and a half so far, and she is so in love with it that when we aren't doing the curriculum, she's either playing one of the many games that were included with the program, pretending that she is being the teacher, practicing her letters, or playing the Circle Time CD. Over and over and over. And then over again. She literally cannot get enough.

I will be showing you specific activities and lessons, but I wanted to do an overview at first so that you can see just how perfect this matches Sweet B's needs, as well as Strong B (her 3 year-old little brother)

Stay tuned as I take you on an adventure through our new normal and show you glimpses of what and how I am teaching her and her little brother! I also hope to write about my other interests and another area of importance in Sweet B's life. If I switch blogs, I will be letting you know so that you can join me there!

Sadness

Tonight a sadness engulfs me as I cry in my bedroom.  Today's meeting did not go as I wanted, and in fact, I've got a lot of things to work out in my head, dealing from anger to sadness, to just being more overwhelmed than I have ever been in my life.

I went in today to the meeting with the full expectation that they would see that she can eat small bites, and would immediately book her into the hospital to begin the tube-weaning program. Well, first of all, insurance only covers four days of these programs, and second of all, she is nowhere near being ready to be admitted to an intensive tube-weaning program.

In front of the one sided mirror today, she ate a few bites of macaroni and cheese, half of her smoothie, and a few bites of an apple. We were thrilled. Surely they would notice just how awesome she was eating and see that she is ready.

We were wrong. Soooo wrong. I was wrong in how I thought they would want to wean her. I was wrong in everything.

This is what we learned: No matter how much you starve a child, if they don't have the skills to eat, they won't eat. We knew this before we got her g-tube, we knew this when people would say, "Just get her really hungry! She'll eat! A kid won't let themselves starve!" I knew how wrong they were, and somehow I thought that she had the skills now. As they began telling me that her little bites of only four foods that she will eat is not skillful enough to eat when they starve her, I began seeing that they were right. She pockets her food. Every bite takes such energy. It scares her.

So they gave us OUR NEW PLAN. I hate it. I hate everything about it. I hate that it is going to run our lives. It brings me back to days before Sweet B was on a feeding tube, and we spent hours and hours trying to feed her by bottle, and when she went on the feeding tube, we continued to try to get her to eat orally at every meal. And did therapies. And doctor visits. And basically I lived my life holed up in our little rental home, devoting my soul to getting her to eat, and roll over, and keep her from getting sick, etc...I gained weight. I had no activities that I enjoyed. I didn't leave the house. I had no friends.

These days I have taken up my health as a big hobby. I cook healthy meals and I exercise and it keeps me sane and happy. I go to Weight Watchers meetings and I'm seven pounds from my goal weight. I have friends. I go to church. I am a part of two moms groups. I take my son to tumbling and Sweet B goes to dance. Sure, she still goes to the doctor often and I still tube-feed her three times a day and offer her food several times a day and feed her overnight through her pump. But it's doable. With OUR NEW PLAN, I'm afraid that I will lose myself, that I will lose the relationship with my toddler boy, and that that I will see my husband even less.

OUR NEW PLAN (summarized...really, it is four typed pages)

-They want her off of her overnight feed as it is not natural to eat while you are sleeping and supposedly keeps you from getting hungry throughout the day. So we must slowly add ounces from her overnight feed to her day feeds. The problem with this is that she gets 30 ounces of formula. I do not know if we can put 30 ounces in her tummy over 12 hours without her going into a retching fit and killing off any desire to eat orally. Other feeding teams believe in keeping the overnight feeds to supplement, but not ours. I don't know what I believe. I suppose it's different for every child.
-I will be doing FIVE separate g-tube feedings throughout the day, as well as FIVE FULL MEALS consisting of one preferred food and one new food. Then the 6th g-tube feeding is to be her overnight pump until we get her off of that. *I also have a toddler son. He will of course be in on the five meals, but the g-tube feeding and all of the venting that that requires for each one, will require him to be able to entertain himself, which is impossibly difficult.
-They want me to subtract some of the calories she eats orally from her tube-feeds, but not all, since they want her to grow even more and get a bit chunky.
-I will be taking her to her doctor for WEEKLY weigh-ins. What will I do with my son during this time? I don't know.
-I am to only let her eat the same food once a day, the rest has to be slightly different. A different brand of mac and cheese, a different flavor of yogurt, etc. The goal is to get her to eat a wider variety of foods so that when she is ready to go into the intensive feeding program, she will have a list of foods to eat. They said a large part of wanting to eat is knowing variety and getting excited about different foods.

I understand what they are trying to do. I understand why they no longer want me to talk to her about coming off of her tube. I understand why this must go slowly. I understand. But it still makes me cry.

I wonder when I'll see my friends, when we'll have play dates, if I'll be able to attend the functions at church that I so desperately need. What about my Weight Watcher meetings?

I know that the answer is that I have to. I have no choice. I am praying that God will make this bearable for me. That He will give me help. I pray that I will keep up my commitment to myself to lose my last seven pounds and continue my exercise programs. That's why I'm having my foot surgery tomorrow...as a commitment to myself.

I've had times where I've handled all that Sweet B needs with grace, and I've had times where I've gone off the deep end, losing myself in the process.

My desire is that in a few days when I blog again, I can see the good in this and I will see that I can still lead a full life, whatever that might be for now. I pray that I can see that I have the strength to do this, and that I can be a loving and attentive mom to both of my children. My heart breaks for my boy. I want him to feel special and that his attention needs are being met. I'm just so overwhelmed and sad.

A Day I've Been Dreading For Three Months

I've been dreading Thursday for three months now. Tomorrow we are going to the hospital to get Sweet B evaluated by the Feeding Team. It will consist of doctors, therapists, and different specialists. They will watch us from a one sided mirror, and I will feed Sweet B two foods that she enjoys, and two foods that she refuses to eat. Choosing both will not be difficult. There are only a few foods that she will eat and nearly all foods fall into the "will not eat" category.

I'm not nervous about getting any new diagnoses. A month ago she was diagnosed with migraine disorder that goes along with her cyclical vomiting syndrome. I'm sure that more will come up over the years (don't we all get new diagnoses over the years??), but that's not on my mind tomorrow. My fear is that they will tell me to continue doing as I am doing. While that might sound good to most, to me, I know that what I am doing is NOT working in the slightest bit. This child has had years of feeding therapy. She knows how to chew and swallow food. Sure, she still pockets it in her mouth and she lifts her tongue upwards and likes to deposit the food under her tongue, but she can get that food down her throat.

I've heard that this particular feeding team feels that a slow approach works best...They do not often recommend the intensive tube weaning program that I strongly desire for my girl.

I'm afraid that Medi-Cal will not approve of an intensive tube weaning program.

See, in order to understand why Sweet B won't eat, I need to give you some details as to how her body and brain work (which is really the same as everyone's). In order to desire food, you have to feel hunger. We are tube-feeding her boluses (a bolus is formula given all at one time, usually over 5 minutes, instead of through a feeding pump which is continuous, which she does at night) of 5 ounces three times a day, and she is on a constant feeding pump throughout the night, which is hooked up to an IV pole by her bed. Given this schedule, she does not get hungry. So imagine someone trying to get you to eat when you don't feel hunger...you're not going to do it and it'll probably make you want to puke.

So you're probably going to ask me, "Why don't you get her hungry then?" The answer is that we try. For about a month, we were given permission to skip her dinner bolus. She got very hungry, and for a week I took her out to ice cream for dinner every night. She ate it. I didn't care that it was ice cream. Then we did a week of yogurt. Some nights it worked really well. Others it didn't. I took her back to her GI doc for a weight check and she had not gained weight. Doctors are primarily concerned with weight and whether or not she is getting enough nutrients to live and thrive, and therefore, I was not allowed to skip her dinner bolus any longer.

I continued to try to get her to eat and her oral eating almost completely stopped. I called the doctor and begged her to let me go back to skipping her bolus. She said it was okay as long as I brought her in for weight checks. But the thing is is that she wouldn't go back to eating...Sweet B had learned something in her smartness...that I would never let her go hungry. If she didn't eat her yogurt for dinner, I wouldn't bolus her, but in four hours she knew she would be hooked up to that feeding pump, and her hunger would be satisfied. You simply cannot withhold food and water from anyone, unless you are wanting them to die.

She has outsmarted us. She is smart. Eating is uncomfortable to her and scary, especially when she is on the verge of a cyclical vomiting episode.

What is truly required to wean someone off a tube is total starvation. They like to see crystals in your urine to show that they are truly dehydrated. Now, I will absolutely not do that at home. I will not bring her body to dangerous levels of malnutrition and dehydration. I'm not a doctor. She needs to be in a hospital, getting her levels of everything checked often. She needs a therapist to help her deal with her fears. She needs a feeding therapist to help her with her chewing.

The Children's Hospital of Orange County is where I'd like her to go. It's a three week program where she lives there, as do I. Now, the thing that makes me ill is that Strong Boy B is two years-old. He needs his mama. He's still nursing and I will not take that away from him at this point. It's been a beautiful part of our relationship and I've dealt with so much horridness by way of trying to feed Sweet B, that Strong B's nursing is my saving grace. He'll have to go with me but live in the Ronald McDonald House with my husband or my mom. He won't be allowed to see her except on the weekends. That's hard stuff. But I'm willing.

I've heard there is a long wait for the program, and I don't know that Medi-Cal covers it, but she is an optimal candidate.

Sometimes they'll admit a child to our own hospital for a tube-weaning program of shorter duration. This is probably my first choice.

I have written the feeding team a long letter stating that I do not want to leave there with suggestions that I already know. Trust me, I could teach a class on tube-feeding and how to get kids to eat, theoretically. The answer doesn't lie in peer pressure or taking them to a fun restaurant and having other kids eat around them. It's much deeper than that. And we've done everything. We used to often get suggestions from people that made us want to scream. Have you tried this? Have you tried that? I think the suggestions have stopped because people either think we are clueless and there's no hope for us, or they've seen the light, that there really is a problem that is not easily handled. I know they did it out of kindness, but we still wanted to scream. I really don't want suggestions from the feeding team tomorrow that make me want to scream.

I will go into the evaluation with my open heart and a sense of urgency. Let's take care of this NOW. We are doing a disservice to her by not doing something BIG to get her off this tube. The time is now.

I've already spoken to Sweet B about why we are taking her and why we want her to eat. She knows.

Yesterday I finally felt such peace about tomorrow. A friend has been praying for me and I could feel those prayers. Today I woke up feeling sick with anxiety. I have foot surgery on Friday and once Saturday rolls around I will feel so much better. It will be over.

Please pray for us and the feeding team. I know that they want the best for their patients and I know that they care deeply. Please pray that God will give them the wisdom, and that God will give me peace and understanding from whatever is answered. If I have been wrong in which way I desire her to be treated, I pray that I am not stubborn and that my ears and heart will be open.

And most importantly, please pray for Sweet B, that she would not be afraid and that she would show those doctors that she has a desire to eat. Thank you friends.

It's About Time for an Update!

I've thought about this blog a few times recently and I realized that I left it on such a bad note! I think that most of you who read this know me in real life, and therefore didn't need an update on Sweet B. But there are those of you who don't know me and those of you who know me from a distance, and you've taken the time to know about her, and so I would like to tell you how she is! It's been hard to acknowledge what I've written here and reread our trials, but I've come to the place where I can.

At one time I believed that I would be able to close this blog with a neatly wrapped up happy ending. Something like, "And she had all of those problems but she got through them and we're all the more stronger for it." Well, I can't wrap it up like that now but I have such wonderful things to share!

I left you with posts of how her cyclical vomiting syndrome (CVS) was ruling and practically ruining our lives, as well as a surgery to get rid of her stone-infested gallbladder and too many hospital stays. The past year has been a dramatic change. She started preschool in a special needs school, where half of her class has special needs and half are typical. She has blossomed in her speech and is now speaking in complete  sentences a lot of the time. She just turned four but her birthday was supposed to be in September, so in micropreemie terms, she's not four yet. We've learned that she is VERY social, taking after Mike and his mom, who will talk to anyone about anything  and befriend anyone in a second. For a few years now it has been my plan to homeschool Sweet B and Strong B completely (and being a former public school teacher, I was totally against homeschooling!) Now I see that she thrives with other people, so I'm considering sending her to kindergarten and then doing homeschool a partial portion of the time, like three days a week, which is actually becoming more common these days.

She's funny. She's sweet. She doesn't throw temper tantrums (unlike Strong B :) and she is very easy to care for behavior-wise. She's got a huge imagination and can sit in a car while we drive for hours, pretending that her fingers are people and that they've got lots of funny scenarios going on. She's beautiful.  Oh my goodness...she's a beauty. She's got determination and will let you know if it's unfair that you're not giving her something that she needs. She tells us that we are "annoying her" and let me tell you, Mike does not take that well!  She loves her little brother and makes him play house with her. She's got the best personality!

Medically, she's still got issues and these issues are very exhausting for us physically and mentally, but we are getting so much better at it.

She's still on the feeding tube for 99.9% of her calories. We give her bolus feeds three times a day and she's on a continuous feeding pump all night. She has started eating small bits of yogurt, smoothies, ice cream, Popsicles, cheese, Oreo cookies, and graham crackers. I am very confident that she will eat someday. I've learned not to give her a deadline or make any predictions with a timeline.

She's still in therapy for her cerebral palsy because she has left-sided weakness. She's starting to be able to walk up and down curbs and stairs by herself. This summer I stopped the physical and occupational therapy and instead enrolled her in swimming and dance lessons. She did so well in both and I'm happy that we took a break! 

The biggest medical issue is her cyclical vomiting syndrome. Remember that she's unable to vomit due to her stomach being wrapped around her esophagus surgically. I can't tell you how much better she's doing with this! We have a system down with her and her school nurse has the system down as well. At one retch we give her zofran and we give her Ati.van at the next retch. We've been able to significantly shorten or abort her week-long episodes, and this has dramatically improved the quality of her life, and ours as well. We are able to predict how much water versus formula to give her in her feed, and she is able to tell us if her head is pounding or if she needs medicine. She does need medicine quite often and we are always watching her for any sign of an episode: retching, little coughs, pale face, watery eyes, even more left-sided weakness where she tilts to the side quite noticeably, grumpiness, crying, tiredness...It's often a guessing game!

There's so much more that I could write, and I actually have a few more blog posts that I'd like to get up soon regarding how I am doing navigating the needs of my daughter as well as the energy of my typical son. (We use the word typical instead of normal, because really, who is normal??) You might recall that it's been quite a struggle for me...I want to put it out there so other special needs moms can read it. We need to be honest! I'd also like to tell you about how we will be meeting with the feeding team very soon and what that will entail.

I try to remind myself often that she came from very very small and scary beginnings and that she is doing very very big things that we NEVER even imagined that she'd do! 

*I realize that the font changed at the end. I can't edit this from my phone, so it'll have to stay.

I love that you can see her g-tube poking through her leotard.

Hopeful For Surgery on Thursday

*I found that my words did not flow as they usually do when I sit down to write this blog. I think the exhaustion is getting to me. Please forgive the uninspired writing in this post.

After my last blog post, Sweet B did end up being admitted to the hospital. It was stressful as the Ronald McDonald House (RMH) did not have an opening the first night and so I had to find a hotel room with Strong B. It was also stressful because Sweet B was in a major CVS episode and wouldn't even do anything but cry. It was awful. They did metabolic testing on her and we won't get any results for another week most likely. (It is very, very scary to have this testing done on my child. The thought of it makes me want to vomit).

They did find that her gallbladder has gone from having "sludge" for a year, to having one stone in April, to having several stones as of now. Her surgeon who she has had before recommended removal because apparently leaving it in place is dangerous as it can cause the pancreas or liver (I think) to swell or something like that (I really have no idea--I just know that it is dangerous). He said it could be causing her a colicky type pain. She is not in screaming pain because it is not inflamed. It probably has nothing to do with her CVS and its removal will most likely do nothing for her retching. But...it could be causing her a bit of pain, which could trigger an episode. Who knows?

The surgeon is hoping that he will be able to remove the gallbladder laparoscopically which is the typical way it is done, with a one or two night hospital stay. However, Sweet B has had surgeries before in the belly area and he will need to find virgin tissue, or else he will have to do this with an open cut. Please God no. The healing of that is really hard and she doesn't need another thing that hurts.

On another note, you should see her scars. They are beautiful in a strange way. She has her scar on her back from her spinal cord untethering. She has the feeding tube scar and the big scar where they cut her whole belly open to do her fundoplication. Then she has the little scars on her feet from being stuck with needles daily in the NICU. If this surgery is laparoscopic, I think there will be another four small scars. She is one brave girl and I love those scars.

Anyway, we were released from the hospital on the third day and she was still in episode and we still had her on a lot of meds. After two more days at home she suddenly came out of it. And we all breathed a sigh of relief. Because I always fear that she will not come out of an episode and we will spend years and years in the hell that is an episode. They scheduled her for surgery on Thursday the 18th. I decided to keep her inside so as not to expose her to any illness so that nothing would postpone the surgery. A day later she started coughing, and got a fever, and not swallowing her spit again, and the coughing made her retch...and she started not tolerating her feeds either by her pump at night or by bolus feed through the tube during the day. We don't know if it's another virus, or the same virus, or another episode, or her gallbladder bothering her. She cried suddenly tonight but she doesn't point to a location of pain. We are so confused and worried and wish that she could just tell us what is wrong. She has language but it is delayed and she is not speaking in sentences yet and is not able to verbalize a lot. We ask her where it hurts and she isn't able to say.

Last night she spent the evening in our bed coughing and I had to keep stopping the feeding pump all night. I don't know if it's virus coughing or CVS retching. I called the surgeon's nurse today and told her that I don't know what is going on and she said they would evaluate it on Thursday morning and tell us if they will do the surgery or not. I really pray that they will do it. I just want it done and I want her out of any possible pain that the gallbladder might be causing her. I want my mind to be able to rest and my heart too.

My mom came over yesterday and gave me a twenty and told me to go out get something for myself, so I went to the thrift store and bought some shorts. I didn't get rid of the baby weight after having Sweet B and I went right on to have Strong B, and both pregnancies I wasn't allowed to exercise or do anything, so needless to say, my clothes do not fit. And why am I not one of those lucky women whose baby weight magically falls off with nursing?? Strong B is still very much getting most of his calories from nursing, and he's eleven months old nearly, so I'm producing a lot. You would think that would help! The only thing it does is give me an extra 7-14 Weight Watcher points. If I stopped nursing I know it would come off a lot quicker, but nursing is more important to me than being thin. I've lost a lot in the past five months but I only have one pair of shorts that fit properly in my current size, so I went and got some that will hold me over until my next size down. It feels so good to be getting the weight off and it was really somewhat fun until the last month happened and I haven't been able to exercise or cook. My hope is that I can get back on the wagon soon. I need it! Finally doing this for myself and getting myself back has been so good for me. Anyway, it was WONDERFUL to get out and did me so much good, especially since I spent the night dealing with a coughing Sweet B and her pump.

My prayer is that she will be strong enough for her surgery on Thursday. We are all so tired. We feel isolated. Summer is always my favorite time of year and spending the last six weeks with her sick and in episodes and fighting going to the hospital have really done a number on us. Mike and I joke that we better not see the other one secretly sneak off to the car with a suitcase!

I will say that I had my best stay so far at the RMH because my dear friend was there whom I met in the NICU three years ago. Her daughter was recovering in the ICU after her surgery. We met for our meals and it was almost...fun? Okay, it really was miserable as it usually is and nowhere near fun but having a dear friend there made it manageable. We said it was like summer camp....but the kind of summer camp that you never want to go to!

We are breathing in and out and hoping that our lives will settle and that we will be able to just breathe without fear or worry. It's coming, right?

How We're Coping with Being Admitted to the Hospital

Sweet B was very close to being admitted to the hospital today. Against our better judgement, we met our friends at the zoo. She had been doing decently yesterday so we thought that her episode had passed. This morning when she woke up the retching and begging to go back to bed began. In my heart I knew that we were doing the wrong thing, but we had already made plans with our friends. Inside the zoo, her face became very pale and she began retching hard. I knew that it was time to call the hospital. Our normal protocol is to wait 24 hours and give her meds to try and stop the attack. I got very scared and didn't feel that I had it in me to wait. This has been going on and off for almost a month. I called the on-call GI who agreed that she needed a room. We left the zoo and began driving to the ER but then realized that we would be waiting hours in the ER and it would just be better to go home and wait for the room.

As soon as we got home, after an hour of driving, we got the call that the room was ready (of course). The state of my house is a disaster because I simply have not had the time or the energy to clean it. My plans were to clean for an hour and do as much as I could. I couldn't bear the thought of my mom or anyone coming to pick up stuff for us during our hospital stay and seeing what had happened to the house. I ran around desperately picking things up and doing dishes and meanwhile Sweet B seemed a tiny bit better. We decided to keep her home for the full 24 hour period to see if we could abort the attack. I called the GI and she agreed to trust my instincts as the mom.

A few days ago it was brought to our attention that Cyclical Vomiting Syndrome (CVS) could be due to other problems such as metabolic disorders or other things. This lead me to google which lead me to very bad things. I've seen that CVS can be a sign of fatal diseases such as mitochondrial disease. I told the on-call doc that Sweet B needs to have this particular test done to see if it is a metabolic syndrome. She agreed to it. Embarrassingly I asked her if Sweet B was going to die and if she had these diseases and she couldn't assure me of anything--she doesn't even know Sweet B. I began crying and told her I had been googling and instead of telling me to get off google, she said that these things could be wrong with her and that's why we have to test. CVS could mask a deadly metabolic disease. In one-third of children with CVS, they have metabolic disorders or mitochondrial disorders, some of which are fatal.

I've not been well and frankly, I've had two friends tell me that they are concerned about me. My weakness is google and obsessing on all of the things that could be wrong with her, and for the last few days I have been a wreck--googling and researching and looking at studies that have been done. Sometimes knowing too much is not a good thing. The fact that she went into full-on episode today was enough to almost throw me over the edge.

The plan is to re-evaluate tomorrow morning (Sunday morning), and if she is still in episode, then we must go. Meanwhile tonight I am packing and cleaning because I just don't want my house like this. It makes me feel like a terrible homemaker and mom and I'm praying that I will get a lot of it done tonight, in the middle of administering meds and nursing the baby and watching him of course. So far I've done dishes and organized a lot and Mike has vacuumed. There is still so much more to do but I will have to let it go. I have done what I can. I think I will sleep with Sweet B tonight. I am scared of all of the meds we have given her.

It has become clear to me that I need support with raising a child with a chronic illness. CVS is devastating on the lives of the person who is ill and their families. Adults are unable to work and children miss so much school and it is completely disabling. We have gone from having a micro preemie who didn't eat and was given a g-tube, to a child with a tethered cord, to a child with cerebral palsy, to a child whose CVS diagnosis makes the quality of her life and our lives diminished. I obviously need some sort of support group and a counselor who can give me strategies to get through her episodes, because by day four I am a mess. Watching your child suffer endlessly and not knowing why and not knowing if she is going to live, is something that should only be reserved for the people in hell, certainly not a family who has given up everything to give this child the best shot at life. (And maybe, just maybe, God could have had a little empathy for me and realized that I am not the strongest person in the world, and maybe another mother would have handled this much better).

It has been a really terrible month that began with a car accident that I was in with the kids while on the way to a friend's home. It was very scary and it was very much not my fault, but there were no witnesses and therefore her insurance has refused to pay, so we are left with a deductible to pay, which we don't have it all, and a dinged up car (our only car). Then began the retching, which turned into a virus which all of us got, and then turned back into retching and this is when I lost it I suppose and I could not clean my house. Where was I going with this?.....Oh, I guess I was just saying that this has been a crappy month.

I have learned through speaking with other families of special needs children, that you quickly learn who is there for you...Who will take the time to pray for you or offer you kind words of encouragement, through texting or message. And you unfortunately learn who won't do these things. It is an eye-opener certainly. Was that a bit too honest? Probably. But it is the truth and I've been so fortunate when I see such good character and empathy in people. I am endlessly grateful to those who are keeping me above water right now and have been there through this most difficult journey over the last three and a half years. It is my promise to do the same for you when you experience hardship and need someone to hold your hand and tell you that it's going to be okay. Humans need other humans. I've met a few friends recently who are very much encouraging me right now and I hope to one day repay that favor.

I will try to give you an update tomorrow, but I cannot promise anything. Today I was completely unable to talk to anyone due to fear. I wrote a very small group text and sent it to those who knew what was going on today. It was difficult to even do that. I just don't have it in me to explain the meds and what I'm doing to help her and what our plans our. It's exhausting. So it was a very general message.

It must be of no surprise to you that my faith is struggling. Hell, we haven't even been able to go to church consistently because she always is having an episode. When we finally decide to try a certain church, she is either in an episode or we or too dang tired, or we know that we have to take advantage of a good day and go and do something fun.

So while my faith is really not there, it is about as big as a mustard seed, and according to God that is all that I need right now. I accidentally spilled mustard seeds in my kitchen and they are very small, but I'm thinking that pretty much sums up the size of my faith right now. So I call on you, my faithful Christians, or whatever the hell you are (see--if I was a faithful Christian right now I would not be using such words as "hell"), please pray, or send out light, or do a rain dance for our Sweet B...She really needs it and so do we.

No Hospitalization Please!

Here goes the task of writing a blog post with enough information but not too much information. I don't want to sound pathetic. (Why do I care? This is life. I am not one to sugar coat things or pretend that my life is perfect). It's a shame that the only time that I write posts is when something bad is happening. It's a shame because there is so much good that is happening in Sweet B's life compared to what we were told to expect. This is something that my husband continually reminds me.

It could be so much worse.

We didn't expect her to live and we certainly never expected her to walk or talk or go to school. So this is something that we must remember. But seriously, who wants to have to repeat a mantra like that over and over?? Let's be real here. Our life is certainly not easy right now, nor has has it been easy for the last three and a half years (since mid-pregnancy with her) and I suspect that we have many more years of it not being easy, and it might not ever be. Being born at a pound and having a tethered cord causes problems. And we see the effects of her being a micro preemie every day. Some are so fortunate that they "grow out of it" and meet their milestones and aren't met with any lasting impacts. Sweet B has definitely been impacted by prematurity and I believe she will feel this impact for her entire life.

Strong B exhausts me in a physical way. He's a typical baby. He cries and demands to nurse and wants attention and love constantly. Sweet B exhausts me emotionally. The worry that I carry for her in my heart weighs me down in a way that I don't even want to describe here.

Since I have had Strong B and he's so typical, I have become keenly aware of just how difficult and different our life is with Sweet B. The hospitalizations and g-tube and therapies and constant appointments is such a contrast to the normal mom exhaustion that I face with Strong B. He eats. He is almost walking. He went from crawling to cruising along furniture within a week rather than a year. We don't have to fight for every single milestone with him. This has been so healing but has also showed me just how different life with her is, and how much more of a daily struggle that she faces as opposed to a typical child.

Sweet B's Cyclical Vomiting Syndrome (CVS) is more challenging for us than the fact that she only eats through a feeding tube. In fact, living with a feeding tube for the rest of her life would be easier than living the rest of her life with CVS. Her cerebral palsy is easier to deal with than CVS. Every month, on the same day each month, Sweet B goes into a CVS episode. We try to ward it off with medication but nine out of ten times this doesn't work. She becomes a child whom we don't know. It is called a migraine of the stomach. She cannot open her eyes fully. She stops talking for the entire week. We don't see her smile ever. She hits all of us. (Disciplining a child who hits because she feels bad is quite a puzzle to figure out, and we haven't figured it out yet. I'm hoping her school will help me with this). She retches nonstop but cannot throw up because of the surgery she had. If we dare to go out in public people stare because she doesn't swallow her spit, she retches, and then large amounts of mucous come out of her mouth and pools into her lap.

Today we were in a parade with the moms club that I am in. I was very embarrassed, worrying that people thought I was crazy for making her go out like this. Let me backtrack and tell you that she had a CVS episode for five days and then she got a virus. We all got this virus that made us cough and feel awful. Even baby boy got the virus. As soon as it got better she went back into a CVS episode. So that's two weeks of her (and us) being completely miserable because she's miserable. I had to go to the parade today. I had to join the land of the living and just get out and socialize. Unfortunately I spent the entire time worrying that people thought she was just having a tantrum or that I had no business having her out. My original plan was to just have Strong B in the parade, but I put Sweet B in her cute dress and I so badly wanted her to have a good time, but it didn't happen. She was retching as we walked and  we put the umbrella up on her stroller to hide her and I wiped her mouth as we walked and she retched. It was about as fun as it sounds. It was nice to get out though. I really am serious about that. I need to get out more, especially when she's having an episode. Last night I took Strong B on a date to the mall, and I had such a good time trying clothes on him and just feeling like a typical mom for the hour that we were there.

Sweet B is set to start a very special preschool program in August, and my fear is that every time she gets a virus, a cold, or the flu, that this will put her into a CVS episode and she will miss two weeks out of every month. As it is she is probably going to miss a week of school each month from her monthly CVS episodes. I so badly want her to be able to attend school, make friends, and just live a normal life. I am possibly planning on home-schooling her after preschool but I truly believe that she needs to attend this special needs preschool to get her going. I've heard amazing things about it and have met some of the faculty and found them to be so caring.

The hardest part is seeing her suffer and not being able to do anything. Her personality is normally so vibrant. She chases me around the house, demands her tv shows, runs in to every room that I'm in and slams the door, and when we get out of the car she rushes to the door so that she can slam the house door on us. She loves to dance, just like I used to, and she has no qualms about performing for people.  She loves imaginative play and has very involved scenarios going on with her Little People and horse and cow and her Little People playhouse. She has a different voice for them and it is soooo cute.

The second that her CVS starts, this all goes away and she goes into her shell. Her eyelids don't even open all the way. She turns pale. She doesn't want to be held or kissed or for me to read her a story. She wants to lay in bed all day or stare at the tv. So I watch her from a few feet away and I worry. I cry silently. I wish that I wasn't nursing Strong B for that moment in time so that I could take something to help the anxiety that I feel.

Tonight she had a serious retching attack. She could barely catch her breath, so I held her on my lap and tried to drain everything out of her stomach through her g-tube. Mike pushed on her stomach to try to get the air out (with her fundolipication she cannot throw up or burp, so trapped air is painful). Mike repeatedly pushed on her stomach to get all the air out and as the air and liquid came out I poured it into a cup (a clean cup because I have to re administer it) and I was feeling very sad and wondering if she even loved me. It sounds dramatic but I haven't received a hug or a kiss or even a smile for two weeks. Well, I got the encouragement that I needed when she very lightly stroked my arm a few times and patted my leg. It is such a small thing, but so uncharacteristic of her during an episode, and exactly what I needed to keep going until this particular episode is over.

If she is still having the episode on Monday or maybe even tomorrow, then we will hospitalize her. Her GI doctor wants us to hospitalize her after twenty-four hours of an episode, but the hospital is exhausting. You cannot leave the room. You cannot sleep because the doctors and nurses are always in there. I cannot stay there because I am nursing, so this means that I am home alone with Strong B, without a car, and worrying. The doctors administer the meds just like we do, which Sweet B does not tolerate well and becomes mean. But I feel it's just being irresponsible not to take her if she is still bad tomorrow.

I'm praying that we have our Sweet B back tomorrow, although I've been dealing with this long enough to know that she will most likely be in the hospital on Monday.

Tonight I'm thankful for the things that keep me going: An arm rub from my sweet girl, texts from two very good friends, a baby boy who giggles and crawls frantically to me every time I enter the room, parents who call and text me every day, a husband who has been with me since I was nineteen--for eighteen years and still loves me as much as he did when I didn't know this kind of worry, and my three-legged poodle who runs around like a puppy at nine years old and reminds me that disabilities don't define you.

Tomorrow I'm praying Sweet B will spend the day with my mom who has volunteered to watch her as we try to relax. I don't know what we'll do. I want to take Strong B to the beach but I'll probably see other toddlers and miss my girl like crazy. Maybe I'll just sleep while Mike and the boy watch baseball.

I just don't want to have to admit her to the hospital.