Still Waiting…..

It’s been 11 days since we visited the immunology clinic to hopefully get some answers as to what is going on with Logan. I can see the blood test results in the portal….but a call to the clinic has revealed that there is still a few tests they are waiting to get back. I know we’re waiting for a blood slide to be evaluated, and further testing on his IgA (not sure what the third test was).

Looking at the portal, Logan’s IgE and IgG levels are normal, but his IgM level is low (along with his IgA). A quick google search says that IgM is the first antibody that the body makes to fight a new infection. According to the GARD (genetic and rare disease) website, one symptom includes frequent yeast infections and could be the cause of the random rashes he experiences.

When the nurse called on Thursday to tell me that they were waiting on test results, she said I would hear back something at the beginning of next week. Hopefully we hear something either Monday or Tuesday!

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My Journey With Cloth Pads (months 1 and 2)

If you’re a guy, this post probably isn’t for you….unless you are interested in the female reproductive system.

I have always had very rough periods. They are heavy, they are painful and the mood swings are just plain nuts! While in college, I was put on birth control pills to stop my periods, so that I wouldn’t suffer every month. In the 7 years I was on continuous birth control I had a total of 4 periods. When my husband and I decided to start trying to have a baby, I naturally went off the pill. All the horribleness of being a woman came back, with an added perk. Apparently while I was on a period hiatus, maxi pad companies began putting something in their pads that caused a nasty chemical burn between my legs every month. It was a vicious cycle of a week long period, followed by 3 weeks trying to heal the chemical burn…..rinse and repeat.

Something had to be done. Thanks in large part to how my uterus sits in my body, I can’t wear tampons. Menstrual cups are too long (even the shallow ones) so those are out and the thought of free bleeding grossed me out (no offense to any free bleeders out there, it just isn’t for me). A few months ago I stumbled across a diy cloth menstrual pad pattern and finally got up the courage to try it.

I found a cloth pattern Here that had rave reviews and got to work. After weeks of research, I gathered some supplies and got to work.

Month 1:

Materials used: Luna Wolf pad pattern printed out, flannel purchased from Joann’s, 100% cotton towel purchased from Walmart, sewing machine.

Having never used a cloth pad before, I cut out the patterns and made one of each size. Each one was the same: flannel for the top and bottom, 2-3 layers of towel for the core and 2 pieces of flannel to wedge the towel between to ease sewing. I followed the pattern and did a hidden core for this month. This is the finished products, ranging in size from panty liner to 11.5″.

I used buttons to hold the wings down, but should have made the button holes smaller because they didn’t like to stay fastened.

I was surprised by how well these worked. I only leaked through once, but it was hardly even a leak. The end result was a bit thicker than I would have liked, but was still thinner than an overnight pad. Once it was on I barely even noticed it was there, and no one could tell standing behind me that I even had a pad on (I asked). The only real problem I had was that they weren’t the easiest to rinse clean. I would rinse in the sink and then put them in a bucket of Oxy Clean to soak for the night before tossing them in the laundry the next morning.

Month 2:

I used the same pattern for month 2, but only made the 8.5″ pad. Instead of a flannel top and bottom with a terry core I decided to try a mixture of cotton and flannel, with an exposed core. Each pad had a flannel back and 4 layers of flannel for the core. The top of the pad and the top of the core were either flannel/flannel, cotton/flannel, flannel/cotton or cotton/cotton. Instead of buttons, I used sew on Velcro. They looked like this:

I loved the way they turned out!

Here’s what I learned:

  1. exposed cores are significantly easier to sew than the hidden core. I used a straight stitch to sew the core layers together and then used a zig zag stitch to secure the core to the top.
  2. Cotton tops are WAY easier to rinse clean than their flannel counterparts.
  3. Cotton tops were “cooler” to wear and seemed to wick the wetness away better than the flannel ones do.
  4. Velcro is a much better idea than buttons. It was easier to put on and the pad stayed in place.
  5. If you’re going to do an all flannel core, you need significantly more layers. I thought 4 was plenty, but leaked through a lot. (Thank the Lord for black pants) Even with frequent changes, the leaks were crazy.
  6. I need something longer than 8.5″ on days 1 and 2, and at night. I also need to skinny the pattern up a bit. It’s too wide for me, so the pad bunches up a bit between my legs.

Plans for next month:

  • I am going to try a few new patterns in different shapes and sizes. The rounded pattern is great and super easy to sew, but I have had my eye on a squared pattern that looks super easy.
  • I am going to stick with the flannel for the topper and backer. It’s cheap and easy to get in a variety of patterns and colors…..and works really well.
  • I am going to continue with the exposed core. I think it looks just as cute, and is so much easier to sew (and lets face it, with 2 boys I need to spend as little time as possible at the sewing machine).
  • I am going to continue with the cotton top on the core. I like the way it wicks the moisture away from my skin and washes clean easily.
  • I am going back to a cotton towel core. I need the absorbency that a towel offers and can get terry cotton towels for $2.50 at Walmart.
  • I am going to continue with Velcro. It’s cheap and easy….and why make things harder than they have to be?

Stay tuned to see how month 3 turns out

4 Specialists Later…..

I’ve been meaning to post this for a few days now, but it’s been a bit crazy here this week. We are making some progress in figuring out what’s going on with Logan! First a quick update: last week we went into the pediatricians office for a few more blood tests. Those results showed anemia, and a low IgA, which led to more questions. The pediatrician spoke with oncology, who wanted us to visit with immunology to do a work up of Logans immune system. While there, they took a TON of blood and did a skin prick test on him for Candida.

Here’s what we know:

  • The issue with Logans lymph nodes being enlarged is a separate issue than what’s going on with his immune system.
  • They believe that Logan has a very rare medical condition known as Rosai Dorfman Disease (RDD). There have been 650 reported cases world wide since it was “discovered” in 1969. We will need a biopsy of his lymph nodes to confirm this diagnosis. RDD is basically where the body over produces a certain white blood cell, where they accumulate in lymph nodes. Most cases (70-80%) resolve on their own, and no treatment is necessary.
  • We know that Logan is anemic. His iron level was 17 (18-55 normal range), his UIBC is 421 (range 148-395) and iron saturation is 4% (15-55%). We are to increase his iron intake and retest in a few months.
  • In this latest round of testing we also learned that Logan’s IgA is really low. It should be between 21 and 111, with an average of 60 at 16 months old. Logan’s level is 14. IgA is the antibodies produced by the body to fight infection, bacteria, viruses, toxins and also comes into play when your body is having an allergic reaction.
  • While at the immunology appointment, we discussed how Logan has always suffered from yeast infections, whether it be oral thrush or rashes in his diaper area. The did a skin prick test on him with Candida, which came back positive. In the grander scheme of things we don’t know what this means.
  • We have been given the go ahead to use essential oils on Logan to boost his immune system and support his lymphatic system.

What we don’t know:

  • Blood tests have been drawn to see how the rest of his immune system is functioning. We don’t know if any of his other antibodies (IgG, IgM and IgE) have been affected, but should know more in a few days.
  • We don’t know why Logan is anemic. He eats an iron rich diet already, and takes a vitamin gummy with added iron in it daily.
  • We don’t know if Logan has an allergy related to Candida that is causing a low IgA response, or if his immune system has been compromised and he just can’t kick the yeast.

Throughout all of this, Logan has been such a trooper. He is loving life as always and is just a joy. He doesn’t seem to be bothered by much aside from the pokes at the doctor, and is just as rambunctious as ever.

Finally an Update

Over the past week I have gotten tons of messages from people worried about Luke and Logan, and looking for an update. Well, at the time I didn’t have any updates to give…..but I finally have some direction. For those that don’t know, we are facing surgery for Luke to release a tendon in his thumb that is preventing him from being able to straighten his thumb and aren’t sure what’s going on with Logan, but his lymph nodes are enlarged throughout his body.

First off: Luke’s thumb goes in and out of being stuck, so we are still looking at a possible surgery for him. I’ve been rubbing diluted wintergreen oil on his hand and it seems to be helping a little bit so I’m going to give it more time to work before calling the pediatric orthopedic doctor back.

Logan: his first set of labs came back flagged for review from a pathologist. His red blood cells vary in size and shape in an abnormal way. We don’t know what this means, but that’s what the labs showed. They also showed that he is low on calcium and his ALT is double what it should be. We have ruled out all forms of cancer at this point. General surgery and oncology conferred and DO NOT think that a biopsy or removal of the largest lymph nodes needs to be done right now.

I asked about the possibility of his test results indicating a possible celiac diagnosis or another autoimmune disorder. The oncologist finally got back to me and said that it IS a very good possibility, and would also explain why he has had diarrhea off and on his whole life, started itching when we started solids with no actual rash and could be causing malabsorption issues which is causing his leg bones to bow out.

The next steps are to call the pediatricians office and request a celiac panel to be run. I can also call the gastroenterologist if I wanted to for the same test.

So while we still don’t have an answer, and more and more lymph nodes are showing up enlarged every day…..we do have a direction to go and hopefully answers are around the corner.

We Could Use Some Prayers

This is my first blog post of 2018. I have fully intended on doing more blogging, but life has been kicking my butt lately, and by the time I am finally able to sit down and write I’m so exhausted I just want to go to bed. Life around here has been pretty stressful this past couple weeks. Illness and injury have hit our house hard.

Luke

A few weeks ago, Luke was involved in an accident with an Epi Pen. After a morning of running errands, the boys and I stopped home so we could unload the car, and so I could go to the bathroom. In the 28 seconds that it took for me to walk from the living room to the bathroom, Luke dug my purse out of the diaper bag and pulled my Epipen out. I heard a snap, and then crying. I ran out to the living room to find Luke crying, his thumb bent and bloody. We rushed him to the ER after realizing that he got my Epipen out of my purse and it went through his thumb.

The ER doctor cleaned his thumb and said that the epinephrine was constricting his little capillaries in his thumb and when the meds wore off his thumb would straighten. Unfortunately 24 hours later his thumb was worse. It was more swollen, and he was complaining it hurt….so off to the pediatrician we went. This was a first in injuries for the pediatricians office, so the recommendation was to let him play in warm water as much as possible and if his thumb was still locked on Monday to call and have him seen by a pediatric orthopedic doctor specializing in hands.

Monday came with no change to his thumb. I could on occasion pull it straight, but it didn’t stay that way long. We went to the orthopedic clinic and he was diagnosed with trigger thumb. Basically, the tendon has formed a giant knot from the injury to it and is stuck under the sheath that allows the tendon to slide back and forth in the thumb.

We are to work on the inflammation and if his thumb isn’t better (or gets worse) in the next couple weeks, we are supposed to bring him back to schedule a surgery on it.

Luke also has been struggling off and on with a fever. While at the doctors office, he licked the mirror and 3 days later had croup. A few days later, he was fine……and a few days after that had a fever again. He seems to be doing okay now, but it’s been a rough couple weeks for him.

Logan

Logan has been dealing with his own health demons. Shortly before he had the tubes placed in his ears, we noticed a swollen lymph node in his neck. Convinced it was because of chronic ear infections, we decided to wait and see what it would do. At his 12 month appointment the lymph node was still enlarged. We decided to keep waiting. He had, after all been through a pretty rough time. At his 15 month appointment I mentioned it to the doctor, because the lymph node was still enlarged and was getting bigger. She put him on a round of antibiotics, thinking that it was infected and told us to come back in 3 weeks if it was still there. We only made it 2.5 weeks because I noticed a giant lump on Logans back as he was walking through the kitchen.

The pediatrician had us come in right away and took a look. The lymph node in his neck was even larger, and they were concerned about the lump on his back. We were referred to general surgery (the same lady who repaired both his hernias) and sent for an ultrasound of the nodes.

The one on his back turned out to be nothing. The lymph node on his neck needed further evaluation. Anything over 1 cm is considered abnormal. Logans big one measured 1.85cm with several more over 1 cm. The radiologist told us to call oncology and get an appointment ASAP.

Friday, I called to get an appointment with oncology. They pulled up his ultrasound and spoke with general surgery as well as the pediatrician, and wanted him in that day. After some discussion and an exam, the oncologist ordered a ton of lab work. She found several swollen lymph nodes in his neck and groin, and was concerned.

Initial testing has ruled out leukemia, but the doctors are still worried that Logan may have a form of lymphoma or an autoimmune disorder that is wreaking havoc on his body. The results that we were able to get in office showed some wonky stuff going on, and the remainder of the blood was sent to Lab Corp for further evaluation. Results should be in tomorrow. We did find out that Logans red blood cells are very tiny and that his lymphocytes are elevated (amongst other things).

All weekend long, Logan has been battling hives that seem to come and go (but welt really big), and woke up this morning with an oozing sore on his inner thighs. I will talk to the oncologist about this Monday when she calls with the blood test results.

So right now the boys could really use some prayers. Luke is facing a possible surgery to release the tendon so that his thumb can move freely…..and Logan is facing a possible cancer or autoimmune diagnoses (which who knows what that will entail).

2017, A Year In Review

2017 has been quite the year full of ups, downs and everything in between. Looking back at everything that’s happened this year, I can’t believe how far we’ve come!

In 2017 both mine and my husbands cars were broken into (at different locations), Logan was hospitalized once, I was hospitalized twice, we bought a house, we got pregnant with our beautiful Lily and then lost her in the second trimester, Logan and I both had multiple surgeries and Luke finally outgrew most of his allergies, we sold my car, I started a new business, both boys started sleeping through the night most nights, Ronny got a promotion at work, I was hired by amazon but couldn’t complete the training because of schedule conflicts, Logan started to walk, Luke started to talk, Luke’s imagination came to life, Logan grew from a baby to a boy…..and so much more.

As we enter the new year, I can’t help but be thankful for everything that has happened this year. Without the triumphs and tribulations my husband and I wouldn’t be as strong and as happy as we are. We have overcome so much and are only stronger because of it.

We (read I) have goals for the new year as well. I’d really like to declutter and organize my house. I’m holding on to so much stuff that only takes up space. I’d like to get some home improvement stuff done including redoing the kitchen cabinets and counters, enclose the remainder of our yard in privacy fence, grass the back yard, and put a patio/deck on the front and back of the house. We’d also like to add electricity to the garage and get an electric garage door. I’d like to continue sharing Young Living with others and rank up to silver. I’d like to save enough money to be able to afford, or be hired on by a company that offers fertility coverage so that we can try for a baby girl this year. And as far fetched as it is, I would love to write and publish a children’s book.

Happy 1st Birthday Logan!

A year ago today (just about right now actually) we had just found out that Logan was coming today, instead of December 2nd. What could only be described as the craziest most wonderful days of my life, our precious littlest boy was born.

Logan has been such an amazing (and ornery) little boy from the start. He only cries when he’s hungry. He is so incredibly smart and has figured out ways around things quicker than most kids. He loves to eat, in fact he’s usually chewing on something. He’s such a funny little dude. He’s so strong too. Logan doesn’t give away his hugs and smooches as freely as Luke did. When you get a Logan smooch, you can feel the love through and through. He probably has the cutest baby mean mug I have ever seen in my life, but he also is the most observant baby ever.