Nonnie and Papi visit

Today was a good low key day. K woke up at 6:45am for a bottle but then went back to sleep until 10:20!!! Lazy baby.

Nonnie and Papi came to visit and Papi spent time with k while nonnie, L and I went out to lunch. It was great to have some adult time. L had to go back to work after lunch so Nonnie and I ran some errands.

First we went to stride rite and got K a new pair of shoes. She is now a size 6. Big feet for a little girl.

Then we went to fresh market to try to find some new snacks for K. We found her some freeze dried pears and some really concentrated pear juice. K used to love the freeze dried pears but had some trouble swallowing them again today.

Next we went to Kroger. Nonnie and Papi brought us some beautiful filets for dinner tonight so we went to pick up some salad to go with it.

Last stop was babies r us. Nonnie wanted to get K some new slippers since she grew out of her old ones. We found her some adorable doc McStuffins bath toys, and outfit, and slippers. K was so excited for her surprises when we got home.

Nonnie and Papi took K for a wagon ride and then we tried to get K down for a nap. That wasn’t happening today. She was soooooo cranky this afternoon.

K seems to be adjusting to the Nexium and 24 cal/oz elecare ok. She had two bad poops today. The second one looked terrible with mucus and possibly some blood. I talked to a few people and they said they went through this for about 2 weeks after starting Nexium so we are going to ride it out and keep a watchful eye.

K has been struggling with separation anxiety from me lately and has not been letting me put her to bed for the past week. Well tonight, she finally let me put her down again. It might have been sheer exhaustion but I am hoping not. K had a little fever at bed time tonight. She was 100.7 but that is kind of her norm these days.

After K went to bed, L and I made dinner and then finished up season 4 of The Walking Dead. We are catching up.

Current meds:
Augmentin 5ml twice a day
Nystatin 2ml four times a day
Zyrtec 2.5ml once a day
Nexium 10 mg twice a day
Methyl folate 1ml once a day
Vitamin D 2,400iu once a day
Theralac probiotic 1/4tsp once a day
Zinc 15mg once a day

GI doctor

We met with K’s new GI doctor today. He was AMAZING. He listened to K’s history from when she was a baby up until where we are today. He agrees that K has FPIES but also thinks there could be more going on. The GI’s plan is to start K on Nexium for the next two months and then do an endoscopy and a flexsigmondoscopy(sp). He said that her symptoms are consistent with EoE but it also could be as simple as a sever feeding aversion that can be addressed with feeding therapy.

Her also wants us to gradually concentrate K’s infant formula up to 30 cal/oz so that we can transition over to Elecare Jr instead. He said the Jr has more micronutrients that are important for her development.

The other good news is that we got K’s throat cultures back. She is E. coli free thankfully.

Current meds:
Augmentin 5ml twice a day
Nystatin 2ml four times a day
Zyrtec 2.5ml once a day
Nexium 10 mg twice a day
Methyl folate 1ml once a day
Vitamin D 2,400iu once a day
Theralac probiotic 1/4tsp once a day
Zing 15mg once a day

Immunologist appointment

Today K had her first appointment with the immunologist. We left the house at 9:10am to go and pick L up from work to head down town for the appt. We arrived just in time to fill out our new patient forms before we were called back into the exam room.

The immunologist was very nice and listened to what we had to say about all of K’s complex medical history. He did not have any immediate answers but wanted to do a few things. First, he wanted to run some additional labs through a different lab. He said that K’s labs looked strange and he wanted to make sure they were being run correctly.

Second, he said that he wants K to see an infectious disease doctor to address her chronic strep throat and her recent E. coli in her throat. He made a referral for us and we are waiting for an appt to be scheduled.

Next thing he wants is for K to be seen by a hematologist. He said that her MTHFR mutations can cause clotting disorders so she should be seen by a hematologist. I have located a pediatric hematologist and need to call and set up an appt.

Lastly, he wants K to be seen by a GI again. K has not been to her GI in almost a year and I was not impressed with him when we previously saw him so I asked a few fellow FPIES mommies who they see and got the name of one. Good news is, they can see K tomorrow. The immunologist is also an allergist and he feels K fits the symptoms of FPIES for some things but not others. He thinks that she may have FPIES as well as something else going on and wants her to be scoped. We will be headed back down town for that appointment tomorrow.

Once we finished our appt, we went and had K’s labs drawn. She was not happy in the waiting room because it was nap time. She was even more mad once she realized she was getting blood drawn. They took several vials but she did great.

Kaylee was pretty fussy on the ride home and refused to nap today. I know she has got to be exhausted because she was also up for an hour from 2:30-3:30 last night. We are thinking a quinoa fail but are not entirely sure yet.

We are now just relaxing and watching doc.

Augmentin 5ml twice a day
Nystatin 2ml four times a day
Methyl folate ml once a day
Zinc 15 mg once a day
Vitamin D 2400 iu once a day
Theralac probiotic once a day

Lots to catch up on

Wow. I have been really slacking on updating lately. The holidays were crazy and then I just haven’t been able to get myself in the mood to update. I know it makes me feel better when I do update so I am going to try to do better about it again. This update may be boring because I am just going to try to catch up from where I left off.

Last update was on December 23 when L tested positive for strep.

As of December 24, 2014 we had still not heard anything from Emory regarding an appt for K. I called her immunologist and told her K was not getting any better and at times seemed worse. The response I got made me very upset. I was told that if I thought K was getting worse then I should take her to the children’s hospital and ask them to admit K and have an immunological work up or ask Dr. Jill to direct admit K. Yes, that’s exactly what I want to do on Christmas Eve. At that point, I didn’t think it was necessary to be hospitalized especially during flu season with an immunocompromised child.

We celebrated Christmas Eve with my mom. It was nice having family in to visit. K really enjoyed her time with grandma.

On Christmas Day, L’s parents joined us. We had a great day opening presents, a nice dinner, and we enjoyed our new chiminea. It was awesome to have christmas in our own how and K was spoiled rotten.

On December 26th K’s aunt and uncle came to stay the night and have fun also. We had a house full between the two of them, my mom and L’s parents.

We spent the next few days relaxing and dropped my mom off at the airport on December 28th and then went to L’s parents for Christmas with that side of the family. We had a great time celebrating Nonnie’s birthday and Christmas.

On December 29, we received K’s lab results back. They indicated that K had two MTHFR mutations. She has a copy of each the C677T and the A1298C. This decreases her efficiency in activating folate to ~50%. Folate is critical for cell repair, cell division, detox, and protein syntheses. K will supplement with 400mcg of methyl folate to help this. K’s strep markers also came back. They were only slightly negative. Her total IgG level had also dropped to 290. K’s zinc levels were also low so we will supplement with 15 mg of zinc picolinate.

I also decided that I was not longer going to sit around and wait for Emory to call and I was going to take matter into my own hands. Whenever I get through to Emory, they always tell me the case is under review. Well they have had her info since November 26, and I’m not waiting any longer so I called and made an appt with a different immunologist. It is for011/16/15 at 11!

On December 31, we were given the go ahead to stop takin the augmentin and see how K’s body would react. We were excited to go into the new year with one less med. We also started an olive trial today.

Well the no Augmentin didn’t last long. On January 2 K’s fevers started to increase and her appetite was decreasing. We took her to Dr. Jill and she tested slightly positive for strep again indicating it was probably on its ways back. Back on the augmentin we go. We also discussed the new immunologist and she thought it was a very good idea and wanted to get more labs done before we go. On a positive note, WE PASSED OLIVES. Our next trial is corn.

On January 5, K had more labs drawn. This time we got to go to the hospital closer to our house which was so much better. It’s so much cleaner and nicer and much newer.

K had her 15 month check up on January 8. She is 33.5 inches tall and 24 pounds 14oz!! She is getting so big. She did not get any vaccines because she has adverse reactions to them. Dr. Jill did a strep culture which was NEGATIVE but she also sent it off to the lab to be sure. K will also be referred for OT to address sensory issues and her feeding issues. K has a yeast infection from all the antibiotics and was put on fluconazole. K had a rough night and vomited in the middle of the night.

On January 9, I contacted Dr. Jill to say I think K was reacting to the fluconazole. I checked my records and K also had mucus in her stools on 9/14/14 from fluconazole so K was switched to nystatin. We also got K’s most recent labs back.
1) Strep Markers: normal
2) HHV-6: IgG = 13.72, positive
IgM = neg; indicates past infection
3) CBC: Neutrophil (bacterial fighters) % improving from 25% to 31%; goal is 50-60%
4) EBV = neg
5) IgG, total – 253, LOW; slight decrease from last draw
IgG1 = 168, Low for age; slight decrease from last draw
IgG2 = 50, low normal; slight decrease from last draw
IgG3 = 26, low normal
IgG4 = <1, LOW
6) CMV = neg
7) Mycoplasma – neg
8) HSV types 1 & 2 = neg

On January 10, we called CORN A PASS! Next trial is quinoa.

Unfortunately, we had to stop the quinoa trial after only one day because we think K's meds are making her vomit at night and we need to make sure we don't miss food fail signs.

On January 12, we got K'a throat culture back. It was still negative for strep but it showed heavy growth of E. coli. I was initially super freaked out by this but apparently E. coli is in everyone's bodies. Because K has been on so many antibiotics, she has no good bacteria left to combat the bad bacteria. Couple that with a deficient immune system and you have a nice comfy home. Unfortunately, the normal treatment for this would be bactrim. K can't have bactrim because she is allergic. The other two antibiotics to treat this are not really indicated for kids K's age but what choice did we have. Dr. Jill called in a prescription for Cipro. So I go to the pharmacy to pick it up and they are out of stock and say they will order it for the following day. Perfect. Well I get a call on January 13, the cipro suspension ks on back order and they can't get it. I call around and can't find it. Call Dr. Jill and she calls it in to a compounding pharmacy. Great. I get a call from the compounding pharmacy…insurance won't cover it so the pharmacist and Dr. Jill decide I can crush the pills and give it to her that way. I pick up the meds and go to dose her and she vomits everywhere from the taste. Call Dr. Jill again and she said she wanted to reculture K on January 14.

Today we went to get the reculture done. The rapid strep indicated no strep again and the culture is being sent out. Dr. Jill would like K to take the med if I can get it into her. I stopped at cvs and asked for some flavoring syrup. When I got home I crushed the cipro, added water and the syrup and she gagged and vomited again. So I don't really know what else to do.
On a positive note, we restarted our quinoa trial today.

Tomorrow is K's appt with the new immunologist. He is also familiar with FPIES so I am hoping we get some great help and answers and come home with a game plan.

Current meds:
Augmentin 5ml twice a day
Cipro 250mg twice a day
Zyrtec 2.5ml at bed (break this week for immuno appt)
Nystatin 2ml four times a day
Methyl folate ml once a day
Zinc 15 mg once a day
Vitamin D 2400 iu once a day
Theralac probiotic once a day

Strep strikes again

Today L woke up feeling under the weather. He said that he had a scratchy throat, a headache and was dizzy. I immediately told him that he needs to go to the dr because we can’t risk K getting sick so he went to the walk in clinic. Turns out L has strep. I immediately contacted K’s dr who called in a prescription for me as a preventative. She also called in clindamycin for K. She called in the clindamycin because we are pretty sure K gave the strep to L. K’s temp has slowly been creeping up the past few days making us think the augmentin is losing its effectiveness.

With L and K feeling a little under the weather, we decided to have a pj day. L, K, mom and I all stayed in our pjs all day. We just played and relaxes and hung out. We wanted everyone to rest up so everyone feels better for Christmas. K enjoyed time reading with grandma and playing with her baby.

I also spoke to k’s pediatrician about her eating. K is dropping one out of the four bottles she takes a day. Her pediatrician said that that is perfectly fine now that we have chick peas as a safe and it will give her an opportunity to explore more solids and begin to get some calories and nutrition from solids instead of being dependent on formula.

K got to FaceTime with her uncle E in Australia and open his gift to her. She got some beautiful new earrings with her birth stone in them.

K is on day 2 of her trial with mandarin oranges. Unfortunately, I don’t know if she is starting to react to them or if we have something else going on. K has a welty looking rash in her privates. I am not sure if it is from the mandarin oranges, the different diapers we used today, or the clindamycin. We are going to power through with a very watchful eye.

Tonight we are expected to have bad storms so I am hoping Kaylee will sleep ok with that going on.

Bed time temp: 101.1
Current meds:
Augmentin 5mL
Clindamycin 3.75 mL
Zyrtec 2.5mL
Advil Infant 2.5mL

Ups and downs

Today we had to take K for more labs. They were fasting labs so we distracted her when she woke up at 6:30 until about 7:30 and then got ready and took K to the lab. They only had one phlebotomist working today so we had to wait forever. K was not called back until close to 9:40. They took 10, yes 10 vials of blood. She screamed and cried but was a trooper like usual. She was excited to get a doc McStuffins sticker. She also got a cute little hand made bear from the hospital.

The phlebotomist also remembered K from her last few draws a s asked what was going on with her. She was almost in tears as I explained it and have L, K and me a hug before we left. It felt good to know that even a stranger cares about our baby and her story is touching people’s lives.

K was so worn out after the draw. She fell asleep in the car on the way home after drinking a bottle. I loved just sitting and watching her sleep.

Once we got home, k had a snack of green beans and chick peas. She is doing really well with those but she doesn’t like her pears. Then we got the poop we had been waiting on. Today was day 4 of chick peas and she got her 4th perfect poop. L and I were confident enough to call CHICK PEAS A PASS a few days early.

L stayed home with K while my mom and I went grocery shopping. Gosh we went everywhere. Sam’s, kroger, publix and then to cvs to pick up K’s meds.

Shortly after getting home, K woke up from her nap. We decided to go ahead and start her next trial. We are going to do mandarin oranges. She had done well with them previously so we shall see.

Grandma also bought K a bottle to use to feed her baby. She caught on quick and loved feeding her baby. I love watching her play and use her imagination each and every day. K also moved on from the book “Put Me In The Zoo” to “Brown Bear Brown Bear” and daddy read it several times. She lived meowing at the kitty.

Now for the frustrating news. I called K’s immunologist at 7:50am. The office opens at 7:30. I am trying to get info on where we stand with Emory. Well at 2:45pm I still had not heard back. The offices closes at 3:30 on Mondays so I called them back. Got a voice mail again. They never called back before the office closed so I researched the number for the dr at emory we are supposed to be seeing. I called several numbers and finally got in contact with someone. Well the clinic has no information on K’s case documented in their computer. They said that the drs were at a conference today but they would ask them tomorrow if they have heard anything and call me back. L and I are so so mad. I contacted K’s pedi and she is wanting to see how the labs that were drawn today (that she ordered) shows and we will go from there if we have not heard from emory.

It is just not fair for my little girl to suffer like this. No one should have to live in constant pain. No child should have to be on antibiotics for this long with no results. My heart is breaking doe my baby girl.

Kaylee went to bed with a temp of 100.9 tonight. 😦

Current Meds:
Augmentin 5mL
Zyrtec 2.5mL
Advil infant 2.5mL

Mom is here

We had a really good and low key day today. K slept in until 7:30, woke up for a bottle and then went back to bed till 9. We all got up and had breakfast together and then got ready for the day.

I got to open my secrete Santa gift from one of my biggest mommy support groups. I LOVED it so much. I got truffles, chocolate covered espresso beans, and chocolate covered Oreo. The best part of the gift was the two hand made coffee cups I got.

K went and ran some errands with L while I went to the airport to pick up my mom. K even smiled her way into a surprise from daddy.

After K woke up from her nap, we all went to Home Depot to get out Christmas present from my mom. We got a chimnea. It is so awesome and I’m sure I’ll have picture to share soon. I didn’t take any tonight but it was awesome sitting by the fire after putting K down for the night.

Chick pea trial is still going really well. K has 6, yes 6, oz today and so far so good! Hoping for anther good diaper tomorrow and we I’ll likely call it a pass.

We are continuing on the augmentin for a while longer to get through the holidays. I also plan on calling K’s immunologist and getting a number for the practice at Emory so that I can call them myself. This waiting has gotten to the point of ridiculous at this point. I would at least feel more at peace if we had an appt date but I can’t just sit around waiting for things to happen.

We are off to blood work first thing in the morning. Ugh. I hate this part. She knows exactly what is going to happen and gets so upset.

Current meds:
Augmentin 5ml
Zyrtec 2.5 ml

Enjoying break

We have had so much fun today. K is really enjoying having daddy home. L got up with K this morning and let me sleep in. It was really nice. K and daddy are loving taking selfies together and K had even found her nose.

L had been letting K hang out down stairs with him lately and she finally found the Christmas presents under the tree today. She kept taking the present from under the tree and bringing them to us. It was so cute. She is going to love christmas.

I went and did some last minute Christmas shopping today while L stayed home with K. K took a 2 hot and 40 minute nap and L cleaned the whole downstairs while I was gone. I was one happy momma. We finished wrapping gifts when I got home.

We started a new trial yesterday. CHICK PEAS. K LOVES THEM. Since she still struggles with foods other then puree, I purees them. I found these chick peas at target which I will be using. I will be using this brand because they are in a carton and not a can. K seems to react to the soy used to seal cans.

I take the whole container and dump it in my blender with the water and all. I am making it really smooth right now since that is what K prefers. My plan is to leave it a little chunkier as we keep going. K got 1.5 teaspoons yesterday and had a great night. Our first symptom is usually a lot of night waking. We got brave and let her have 2 tablespoons today. We shall see how tonight goes but I couldn’t deny her more. She kept crying when the bowl was empty!! She has never liked a food that much. I will also let her try to snack on whole chick peas split in half to work on her swallowing.

K was pretty fussy today and her fever was higher earlier in the day then it normally is. She was 100.5 at 4:20pm today when she has been at about 100.2-100.3 before bed lately. She went to bed at 100.6 so we are thinking her throat is bothering her. She is supposed to finish her augmentin tomorrow but with the holidays coming up, Dr. Jill and I agreed we should keep her on the augmentin for a little while longer.

I am also very frustrated because we still have not heard anything from Emory. Waiting is the worst. I just want to move forward.

Tomorrow we are picking my mom up from the airport. She will be visiting for a week and spending Christmas with us!

Current Meds:
Augmentin 5mL
Zyrtec 2.5mL
Advil Infant 2.5mL

Home sweet home

We are back from our FL trip. We had such a good time. We flew out early Tuesday morning and met up with all of L’s work crew at the hotel. It is always so nice seeing all of our friends that have moved all over the country. We always have a good time catching up. K enjoyed her stay with papi. She played with her baby, watched some Doc McStuffins and went for a few wagon rides with Papi.

Wednesday morning I had a massage. It was amazing and a great time to let some stress melt away. L had meetings all morning and we met up in the afternoon for a few more presentations. K read lots of books with Papí and Nonnie and even got a water bottle to play with.

We decided to stay an extra day past the conference to enjoy some couples time. On Thursday, L and I met my friend N at Epcot. We had a blast exploring all the countries. We road a few rides, hung out with friends, had some different foods, and had lots of drinks. It was great to get away from reality for a bit. We went back to the hotel and had a drink on the back porch. It was perfect. K went swinging, played on the tennis courts, had a wagon ride and got spoiled by nonnie and Papi.

We flew home today. Nonnie and Papi met us at our house with K. We brought K back a doc mcstuffins doll because she is obsessed with doc. We were all so happy to see each other. K smiled ear to ear.

On other news, K’s doctor ordered a bunch more labs. Unfortunately the lab is closed until Monday but we will go first thing in hopes to get some answers. I still have not heard from Emory yet. I called K’s immunologist on Wednesday and told them we still had not heard anything. They said they would call emory and tell them to call me. No such luck yet.

Current meds:
Augmentin 5mL
Zyrtec 2.5mL

Cheecha Fail

Today has been a pretty good day. We got ready for our trip today and stopped by the immunologist Office and picked up her labs since they were not sending them to me. It was very frustrating. Her labs looked ok. Nothing really stood out. We still have not heard from Emory about her appointment.

We are now at Nonnie and Papi’s. K loves being here and loves hanging out with them. She smiles ear to ear when she is here. She did lots of fun things with K today. She had a wagon ride, time on the swing, lots of book reading, and a fun bath. She is going to have a great few days hanging out with Nonnie and Papi.

So the bad news is, K failed Cheecha puffs. I kind knew it was coming from day one when she woke up 3 times in a night. She started getting a few bumps on her back on day 2. Bumps moved to her cheeks on day 3 and today she had a terrible diaper to confirm it.

K had also been coughing more and more so we will restart the Zyrtec. We had stopped it because she was becoming increasingly aggressive while on it so we will see how it goes.

Current Meds:
Augmentin 5mL
Zyrtec 2.5mL