Its been a journey!! We moved to Florida and got care established and they did yet another endoscope on her. Come to find out that she has this rare condition called: sucrase-Isomaltase deficiency. This happens in the brush border of the intestines that lack enzymes to process sugars and starches. We got this diagnosis, but she was doing well enough that she was gaining on her own growth curve nothing to worry about. They tried prescribing her something, but insurance denied it and we went on our merry way because she was ok with what we were doing. Still taking her to appointments and moved to a neighboring county so switched up doctors. Life changed, I started working as a teacher for a hot minute. Got overly busy and canceled an appointment that never got rescheduled. Along came covid. At this point, doctors aren’t seeing patients in person, and we waited. After Thanksgiving, we took a small trip and got pictures taken. She was doing great she actually looked chunky for once!! By December 16th she looked like a skeleton, she quit eating!! I take her to her PCP who doesn’t always work on the days I take her in. She got assigned to another doctor. I knew she needed her gastro doctor, and she needed a referral to see him. The only referral they wanted to give her was for covid 19 depression…. she weighed 35lbs!!!! Like hello!!! So, I took her to the ER on Christmas day, I already had an appointment set up for the gastro clinic. Well, I forgot to include the nutritionist in this referral. Sigh!! However, we stayed a couple of days in the hospital, and they gave the referral, she ate the food enough that we went home. We go to the appointment the doctor is alarmed but we just got out of the hospital, so he wanted to wait and see. Well, they admitted her for 5 days and observed her. The next month they scheduled the endoscope. Keep in mind that we had forgotten about this diagnosis. We were focused on the initial diagnosis of EE. The doctor told me that he doesn’t think she has EE. Sigh. After her scans came back, she didn’t look like she had it either. He pressed me about it, telling me that the first doctor was wrong, and I thought I will bring you pictures from the first scans. I know where they are. We went home and I went to find them and couldn’t find them at all. However, I did find the sucrase Isomaltase diagnosis and brought it to the next appointment. At this point, I am seeing these results and reading about it and saying how the heck did we get this far without this being looked at closer??!  I had signed releases for them to get this information at least 3 times before, and they still didn’t get them. I brought in my copy, and they copied it!! When the doctor saw the results of that testing taken when she was 3 and she is now 9.5 he got the most mortified look on his face ever. He left the room and brought in the nutritionist!! The nutritionist remembers me telling him about it but said without the actual paperwork on it he didn’t think too much about it, because if she had that she wouldn’t be gaining at all!!  So, this is how it went. I had a few more stays in that hospital with her after that. She finally got a feeding tube!! At this point, I will tell anyone that reads this the feeding tube is not a bad thing. We can only do Kate Farms milk because she is allergic to milk which most people with this condition don’t have that issue and can gain weight through drinking milk. Soy is not a good option as we have an autoimmune condition. My life would have been so much easier if we would have gotten this when she was 3 but there was no real need at that point in time. Mostly because she breastfed until she was 4!! The breastmilk as little or as much as she got was exactly what SHE NEEDED!!!
She got her feeding tube in March 2021. They wanted two cartons of milk a day, but this girl can’t handle all that and she did maybe a carton. She gained weight that then they were concerned that she was getting too big, so they cut her back to half a carton a day. About six weeks after that appointment where they cut her back, I increased her to a carton a day because she lost 10lbs. Right now, her weight is stable on a carton a day. She also eats regular food, but she does not eat enough food to maintain herself.
Also, while in this nightmare some nurse got an attitude with me and turned me over to DCFS. I was doing everything that I could to get this worked out, so it didn’t go very far. However, that nurse got into a little trouble over her part in it. This vindictive action is the last thing anybody needs when going through something like this. The most ludicrous thing that they wanted was for Rebekah to get counseling because she said something after surgery about the doctors. Like really, she just woke up with mind-altering substances in her body and you are going to request counseling for that. They tried to tell me that I needed counseling too. I asked them if they would like to live my life for one minute. Of course, I have trauma you are causing it!! Anyway, its not been pleasant at all!! However, it is my journey, and I am sharing it with you. This is how we cope!! 

We have been slightly busy. We had her appointment on May 19th and I didn't post because I was packing to move to Florida. It went well and she did gain weight enough that they didn't complain. She had made it to 17lbs. We figured out that the nasal spray (that we spray in her mouth) was not operating correctly so she was getting the wrong dose of medication and couple that with her not taking the antihistamine made it so she didn't gain weight the last time around. Anyway, she just had her birthday the other day and she is the sweetest little thing ever...she will stop nursing and come up and kiss me on the lips...with the biggest grin ever. She is in to everything and likes to play hide and seek. She also thinks she is a big girl as she does what her brother and sister do...she is fearless!! She talks a little, she can command such as I want this. She also has grown some, but with no insurance yet we have not found her a doctor. Thankfully, the doctors gave us lots of refills, however, they do cost money. We found a house we liked and put in an offer but it was turned down, so we are looking for another house..hopefully we will find one soon, because living in a hotel with three little kids is not

Oh what a lovely day, she threw up and has diarrhea, this child is destined to stay small forever. Really do I need the complication of her been sick on top of her trying to gain weight. I wonder if telling the doctor about this if it will get him to understand, or will I have to be scrutinized some more...grrrr!!! I really am tired of this whole situation and the one thing that gives me some measure of hope is the fact that we are moving to Florida at the end of May. I am hoping the doctors I find down in Florida are a bit more understanding of ALL of baby's conditions and can see that all of them influence how well she does with gaining weight.

Went to see Stacy at therapy today. We have baby on a schedule and she has given up most of her formula in favor of eating food....so she is getting less calories all the way around. I have also figured out that she is allergic to oatmeal. Her excema gets really bad when she eats it.  Oatmeal is one thing I could count on to help her gain weight. According to their scale she is down 1 lb in 3 weeks. Makes me wonder if she has lost more weight since the scheduling began. She drinks 4oz of formula on a good day instead of 14oz. At therapy she drank about 2oz right away and then ate three fourths of the diced peaches, a bite of the waffle and a bite of the rice krispie treat, and maybe 1oz of the baby pears mixed with nutra...sum total 100 calories and then she opted to nurse because she was tired. On saturday she started having loose stools so this isn't helping. I am at a loss as to what to do. Now Stacy explained to me that this is what usually happens to almost 2 year olds because they want to do everything themselves but they can't seem to eat enough food on their own that would satisfy the calorie needs. Baby still has problems with her muscle tone that also limits her intake. The reflux makes her stomach hurt, the esophagitis makes her throat hurt so eating is a big issue for her anyway. I really hope she tells the doctor this because at this point I can't do enough for them.

Went for an appointment at the FUN clinic today. I have seen baby eat a lot and now she is drinking about 12-14oz of her formula a day, this is double the amount that she has done in the past. If I had to total it up I would guess that she is having about 700 calories in addition to nursing. When she was weighed I thought the number seemed low but nobody said anything to me she also tucked her chin so her height measurement was off too. I get in the room and then the doctor the nutritionist and 2 interns come in and they ask me what is going on. Keep in mind these rooms are not that big. I proceed to tell them that she is drinking 12-14oz a day and she eats more food, like her dinner she used to just take a few bites but now she eats several more bites then that...then they realize nobody told me that she has LOST weight...several ounces in 2 months. I can not think of any sickness that would cause that so now they are all over me to put her on a schedule. The doctor said that she has a nice disposition and could handle it. The thing is yea, she does have a sweet disposition but she is very much let me do it my way kind of child..I worry that the first thing she will give up is the formula. Anyway, I am told that every two and half to three hours should be the spacing, because then she will eat more. Oh and the nutrtionist was making faces at my food choices for her. You know it is hard enough to find things that she can and will eat without somebody having the opinion that I should choose a banana over fruit snacks...They are both about 80 calories but one is much easier for her to eat. I have yet to see her eat a whole banana..generally she eats about one fourth to one half and although it is healthier she would not get all her calories in. On to scheduling for now.

Took baby for the endoscope she was the first one at 7:30am. I was concerned about not feeding her but she got distracted and didn't request much. It went quickly and the doctor found that she probably has Eosinophilic Esophogitis. He is waiting on the biopsy results but with the other things he saw it is a good bet that she has this problem. I have been instructed that we will probably have to do an elimination diet if this is the case. This is not a favorite activity because it just makes it that much harder to plan meals and such. The biopsy will let us know which direction to go. I had known that this was a possibility because of her refusal to move forward with food. Really, who wants to eat if there esophogus is all inflamed? I wouldn't want to. On the other hand her muscle tone is getting better so she at least wants to eat more diverse things. She has regained back all the weight she lost from the other week (16lbs 8oz) and has grown in length to 29 1/2 inches. March 18, 2013, it is Eosinophilic esophagitis and she has started flonase sprayed in the mouth...about two weeks later we have a yeast infection to which I am treating it with grapefruit seed extract. She seems to be doing well other than the yeast infection and eats all the time. I am confident that she is gaining weight.

Took her in to the WIC clinic today and she is 15lbs 12 oz and 29 inches long...she also is not anemic which is a shock. She has perfect numbers at 11.3. She has just started eating again and I am trying the bright beginnings high calorie formula again. We shall see how this goes. I also have an appointment for an endoscope on March 12th, hopefully she stays well enough to actually get it done.

On tuesday night after 5pm baby started acting sick and spit up a little bit. She was also running a fever of about 101.5. I always let 24 hours go before I run to the doctor just to see if she will get better on her own. Wednesday night she was still not right and really hadn't eaten much that day. Fever broke about midnight so she went 30 hours. Thursday she wasn't feeling good but no fever. She ate a little but mostly nursed all day. At about 4pm the fever came back. Alright I call the doctors office, he is not available..but someone else can see her. The last time that happened I was having to explain the feeding therapy and the nutrition clinic and everything I am feeding her. Not fun to explain that she is under care and things are been addressed. Well I went anyway. Finally, the doctor comes in and looks her over, which she is up and looking good. Anyway, she has mouth sores. I believe it is part of the cocksackie virus...she doesn't have the sores on her feet or hands or anywhere else just in her mouth. So I guess she will lose a little weight. The sad thing is she wants to eat but it hurts. Do I really need this complication in addition to everything else..NO!! Anyway, she should be better within 5-7 days of this starting. Which means by next tuesday she better be right as rain.

Yet another appointment, on Valentines day no less. Anyway I was hopeful this time. She had stopped drinking her one cup of bright beginnings soy formula (30 calories per oz), and she had stopped eating baby food with nutra in it, but I thought I had beat her to the punch line. Because of her food refusal, I started giving her gogurt...I only needed to give her three a day to replace what her formula would give her. She was at least having three a day, plus other junk food (little debbie snack cakes, goldfish with ranch dressing and fruit snacks.) I figured she was getting at least 350-400 calories which is about her usual (she still nurses six times or more a day). She had gained a whooping 5 ounces. She now weight 16 1/2 lbs at 19 months old. Sad thing is I seem to be the one gaining weight, grrr!!! They want to do an endoscope but the baby has to be perfectly healthy for a full month with no fevers or snotty nose for them to do it...yada, yada, yada!! It's the middle of winter so it probably won't happen anytime too soon. She actually had a snotty nose at this appointment and I hope it doesn't turn into something more!!! The nutritionist brought in high calorie juices for her to try...we tried one...she spit it out...lovely. The doctor is also starting to believe that she might just be petite...Really?!? He still wants to check out her esophogus first...one day!!