Update on Reagan's Geneticist Appointment [finally!]

As some of you might have heard, we rescheduled Reagan's geneticist appointment.... Twice. First they had us scheduled with the wrong doctor, then the doctor cancelled her appointment!

Got all of that sorted out and finally went to the appointment yesterday. I won't waste anymore time, so here's the summery:

Geneticist doesn't think it's likely a genetic problem or else her growth pattern would have had problems from the start, instead of falling off at around 5 months.

She does, however, want to test for 2 specific genetic disorders: Celiac's disease and Cystic Fibrosis (both of those disorders are linked if you aren't familiar with them). I don't see Celiac's as a viable worry because she has NONE of the symtoms besides failure to thrive. Cystic Fibrosis does worry me because she has had on-going respiratory problems and infections.

Lastly, the geneticist recommends we see a Immunologist (immune system specialist) because her blood work has comeback consistently with elevated Lymphocytes and low Neutrophil (both white blood cells) which usually indicates her body is fighting something, possibly an infection or something it believes is foreign (like autoimmune disorders).

We see our primary care doctor in about a week who will schedule an appointment for us with an Immunologist and arrange a sweat-test that will determine if she is positive or negative for Cystic Fibrosis. Crossing my fingers. And toes.

I've cried, I've worried, and I've felt dispair about the prospect that my baby is sick. But none of that is helpful for her, so I am moving along and I plan to take things as they come. As of right now, there is hope, so I am hopeful. I'm saving my worry/despair for if/when it's really needed.

Oh and Reagan is doing WONDERFUL, by the way. She is now a toddler! Last week she went through a fake-cry phase that was funny and annoying at the same time. She got over it pretty quick when she didn't get her way. Climbing the stairs (and anything else she can get her leg over) have become her newest obsession, and I'm getting lots of use out of the baby-gate!

Super-Baby!

Super-Baby and her trusty side-kick Moo-moo take a break from crime fighting to read Blues Clues.

At the neighborhood park!

Going to get acquainted with the other kids :)

So.Fly

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Thanks everybody for your support! :) More updates when they happen!

Um, again.. Sorry.

Yeah I am horrible about updating, I know. But I have an excuse: I've been out of town! And let me tell you, it was no vacation... Rea and I's visit to the family spiraled into a stress-packed week that I'd rather just leave alone & never discuss again. I still love my family, it was just out of anyone's control.

Since I've been home I've been absolutely EXHAUSTED. I didn't get out of bed til almost 11am yesterday. 11-freaking-AM! Today I slept til 9! It's probably been a year since I've slept that late because....

...One year ago this sunday Reagan Belle was brought into this world after 27 long hours of labor. (Who says I don't sacrifice for my child? ;) )



This following weekend is Mother's Day, and last year was my very first Mother's Day when Rea was only 7 days old!

There she is at 7 days! --->

She came at just the right time for Mother's Day, and I was honestly still getting used to the idea of being a Mommy. You'd think I would be used to it already- after all, I did have 9 months of warning that it was going to happen- but it's a pretty enormous concept being the creator and provider of another human being. I don't remember the moment I realized I was a mother, for me it was something I eventually just grew into.. Like a metamorphosis from caterpillar to butterfly. Although sometimes I still feel like I'm just stretching my wings before flying... I'm sure the years ahead have gotta be more challenging than this past year... Cause it was fun as hell. Seriously.



Every time I think she can't get anymore awesome or beautiful, she does! Every time I think I couldn't possibly love her anymore, I my heart stretches just a little bit more to make room. I mean the girl is hilarious... she's a pint-sized baby who likes to act like the whole gallon. Miss Reagan Belle has some big attitude, don't let the sweet face fool you.

<--- See the sweetness?

~~~~ Illustrations of Rea's recent awesome-ness ~~~~

Rea likes to "clean" if we give her a paper towel or baby wipe! She wipes her hands and face, then any and all near-by surfaces!





This is going to be her birthday dress... Taking a picture of her sitting with her back to me was the only way for her to be still enough for a photo.





She was so interested in me painting my toes that she allowed me to paint hers, and even blew on them to dry when I was done!





My baby has a mohawk. Booyah!





Stopping to sniff the flowers... :)






And for a special treat, here's a little video! She is always very carefully imitating and practicing every move I make, which obviously includes kisses and hugs! Rea regularly practices loving on her unicorn and a few other stuffed toys. (But mostly the unicorn... lol).

~~~~~~~ Uber-Quick Health Update ~~~~~~~

In case you missed it, Reagan is getting to see a Geneticist from the Children's Hospital on May 9th. They'll probably ask a lot of questions and make her do more tests, but at least we'll be another step closer. Now that her birthday is finally here, it's starting to seem even more strange that her clothes are mostly 3-6 months; her summer clothes from last year still fit! (So don't get her clothes for her birthday haha, we've got it covered!)

I was also contacted to make an appointment with an Endocrinologist... Get this: for JULY. What a long wait. It's alright, maybe the geneticist will be our last stop.. ? Hope so.

Right now she seems to have a sinus infection... :( Green snot, wet cough and her usual energy is a bit diminished. I picked up antibiotics today from the pharmacy that I didn't fulfill last time she was sick, and got her started on them today. Keeping her comfortable also with a humidifier and LOTS of liquids.

Alright, that's all I've got for today folks, I'll be busy this weekend but should be an update again soonish! :D

A terrible day is coming...

Yes, I am going to be an alarmist and doomsday-announcer to bring to your attention a horrible day that will soon be upon us...

The day my daughter turns 1.

True, I've known it was coming for a long time now, but it doesn't make it any less cruel or unfair for me. Soon my baby will no longer be a baby anymore. Sort of.

Generations of mothers have been in this exact spot, but I really don't feel anything in common with them, because this time it's MY baby growing up. She's getting older and I can't get back any of those precious moments before she could walk, talk, express her opinion or eat solid foods. It's actually pretty depressing to think about.

These days Rea walks everywhere now like a tiny little doll, saying "hi" and "bye" as well as "daddy" and "mommy." She believes kisses are meant for anything she likes, including books, toys, spoons, paper, phones, ipads.. well, anything! Whenever music is played she starts to dance and wave her hands, and likes to make funny monster noises and faces while chasing me around the house.

Rea cannot un-learn the progress she has made in this first year of her life. While she's still small, things are simpler, and her world revolves around mommy and daddy so we can easily control her environment and protect her from danger, right down to nap times and whats for dinner. But the older she gets the more independence she will demand and the harder it will become to keep her safe and innocent. Now she's demanding to feed herself her own dinner, next thing we know she'll probably be demanding use of the car!

It's just scary watching her grow. I want to protect her so badly, but the older she gets the more impossible that becomes until it's completely out of my power.

By now you've gotta be thinking I'm being extremely dramatic, I mean c'mon, she's only turning ONE! But this year flew by so quickly that if the calendar didn't say so I would NEVER believe it's been that long.

In one more year when she turns 2, I'll probably go through a little spell of mommy-depression all over again. I can't prevent her from growing up, but I think it's okay for me to feel just a little bit sad about it.

Now I feel crazy.

All of these doctors appointment, weight checks, urine and blood tests have all been leading up to..... knowing nothing and waiting around.

We saw the doctor for a weight check this morning, she's gained one ounce.. Yippie.

Doc said her thyroid test came back normal, but it's a very basic test and she is sending us to see an Endocrinologist who can look for hormone imbalances and metabolic disorders. We should be getting a call to make an appointment at The Children's Hospital in Chicago within the next two weeks.

She also wants us to see a Geneticist at The Children's Hospital to look at her genes and rule out genetic diseases or disorders. Unfortunately, the wait list for an appointment is a few months...

I get a headache imagining how long this could take to get any solid answers. Part of me wants to throw in the towel and say, obviously she's just small. But the doctor today told me again what I already know: even small babies have a growth pattern. They don't just quit growing for going on 7 months and have horizontal growth charts with no cause. Unless of course, she's a mini freak of nature! (Which I'm kinda pulling for...)

The OFFICIAL Update

Reagan is 11 months old today! One more month til my little princess is a whole YEAR old!!!

Now on to her health update... We saw her pediatrician yesterday to discuss her blood and urine test results. Her urine came back normal, but there were several abnormalities in her blood test. Her doctor emphasized to us that she felt it was likely thyroid related, which although is somewhat rare in infants, is a good prognosis. If it turns out to be a thyroid issue, we simply just have to give her medication, nothing complicated.

There were other abnormalities in her test though that are not connected to thyroid, so in addition to a thyroid test she ordered a CBC (complete blood count, her platelets were high), and a Metabolic test (looks for genetic diseases).

We went to the hospital for the blood test right after her appointment, and this time it was SO MUCH EASIER!!!!! I told the nurse about how difficult it was last time to find a vein and the trauma that came with it, and she called a more experienced nurse in who found the vein in seconds! I was very impressed, and Reagan didn't cry nearly as much. Thank GOD.

The doctor also wants Rea to do another follow-up test in a week or two to check her platelets and carbon dioxide (apparently it was on the low side). She said it could be a fluke that those two were off, but we should double check. I really, really REALLY like how thorough she is being. Finally a doctor is listening to me and investigating!

It's good to know it's not all in my head... It's definitely been implied by some that she has no medical issue, but instead maybe she's "just small" or "needs better nutrition." I have something to say about all that, but I won't say it here.... ;-)

Also noteworthy, they previously prescribed her iron supplements over a month ago after testing her hemoglobin levels at the office, and they were low, which usually indicates anemia, which is most commonly due to low iron. Rea's blood tests showed that in fact she had very HIGH iron, almost too high... No more supplements for her. So of course, I asked the doctor, 'if her iron is high, then what is causing her low hemoglobin and anemia?' The answer was extremely disappointing: the equipment they use to measure hemoglobin is easy to read incorrectly, and she was NEVER anemic. WTF.

As soon as I can get different insurance, I am switching to a new office. I may like this doctor, but the office staff is completely incompetent. First they can't even accurately weigh her, now they also inaccurately measured her hemoglobin levels and wrongly prescribed her supplements that you can overdose on??? (Heard of iron poisoning?? Yeah, it's dangerous). It's ridiculous and unacceptable to me.

Okay, enough ranting.

We should be getting her test results sometime next week; Monday at the earliest for the CBC and Metabolic test, but probably between Wednesday and Friday for the thyroid test. We have an appointment for a weight check already on Wednesday, but we might reschedule if the thyroid test isn't in yet.

To sum it all up for you, we still don't know anything, but we do know that it's not nothing!


P.S. I do not what to speculate about any negative possibilities... I want to wait remain hopeful while I'm waiting for the facts to come in. I would appreciate if you would help me do this! :)

It's good to laugh about it.

Again: No solid news on Reagan's health. We have her blood test but we don't see the doctor til tomorrow afternoon. I will post an update afterwards when we know more. From what I can tell looking at her blood test though, we will probably end up seeing some specialists soon. More on that after tomorrow's appointment!


Yesterday I had some pretty high and low parenting moments. At the end of it all, I just had to sit down and laugh about it.

Reagan and I were upstairs having a lackadaisical morning talking on the phone with my bluetooth and sipping coffee while she played with her toys on the floor. I was just saying how nice it was to sit and down and not be stressed for a few minutes, when Rea came closer and I got a big whiff of something NASTY. I reluctantly peeked in the top of her diaper and sure enough, there was poopie coming out of her diaper and up her back! YUCK. Since I was talking to a fellow mom, I left her on the phone while I took her to her room to change the monster poopie lurking in her diaper.

It got messy.. She started wiggling like a little earth worm and insisting I let her roll over on her belly, despite the fact that her diaper was half off and half of the poo was still stuck on her. Oh yeah. Next thing I know she's flipped her self over, gotten poo on my sleeve and hand, ALL over her changing table, and on her clothes. Oh and remember, throughout this my friend is still listening on the phone, laughing hysterically.

I realize at this point I will not win the battle with wipes alone, so I stripped off her clothes, held her up and away from me (which made her giggle) and headed to the bathtub! I turned on the shower head and started hosing her off, but there was still a lot of poo stuck on her back and I didn't want poo-particles in my bathtub, so I decided to dash back and grab more wipes.

I sprinted into the bedroom and snatched the wipes, turned on a dime, and sprinted back towards the bathroom.

I just didn't make it very far.

I turned the corner out of her room at full speed and WHAM! ... stubbed my little pinky toe full force into the leg of the couch. HOLY D.A.M.N. I said a few four letter words and rolled around on the floor holding my foot saying "OW OW OW OW OW!!!!" And yes, my friend is STILL laughing hysterically in my ear. Maybe a little more sympathetically than before, but still laughing.

I got Reagan all washed up and in fresh clothes, changed my own clothes and washed my hands up to my elbows before I had a good laugh. My pinky toe is still in pain over 24 hours later, but I don't think it's broken. Jammed, perhaps. Oh, the joys of motherhood...

But truly, it is joyful.

Later that night after Reagan had been in bed for several hours, daddy and I were watching The Colbert Report, eating pizza and talking, when suddenly Reagan begins wailing from her bedroom. She has been sleeping through the night since week two, so when she does wake up we check on her.

Daddy and I both came in this time to evaluate the situation, and she was standing at the edge of her crib waiting. It felt a little chilly in her room so I sent daddy to turn the heat on. The second he left the room, Rea began to cry and pointed after him. She calmed down, but continued to look and point at the door. Finally, I stuck my head out and told him to get back in there with me.

Reagan is becoming an opinionated little child: She didn't want daddy to hold her. Or touch her. Or give her kisses. But she also didn't want him to leave the room. Finally, he sat down on the floor to wait while I rocked her for a bit. She leaned and squirmed to look at daddy on the floor until I finally sat down with her and joined him.

There we sat in the dark, listening to Dave Matthews Band lullabies, Reagan pushing daddy away if he got too close, and I just started giggling. Uncontrollably.. I couldn't stop.

That kid has made me okay with looking like an idiot making funny noises at the grocery store, getting poop on my clothes, jamming my toe, waking up anywhere between 7 to 8 am every morning, and sitting on the floor with her in the dark next to daddy at midnight.

Man I'm really not looking forward to that doctor's visit tomorrow...

While I'm waiting...

To get it out of the way: no news on Reagan's test results yet, although I spoke to a nurse who said most likely it will be ready on Monday, and I should hear from the doctor then.

In the mean time, I just have to get some things off my chest.

Since Rea's health issues came to the foreground, I have had many friends, family and even strangers calling, messaging, emailing, and facebooking me to say a variety of things, from encouraging words, requesting updates, to ideas and suggestions on what I could try for her. I understand (and appreciate!) that each and every one of these people have good intentions, and are only trying to help because they care. That's touching.

BUT (there's always a but), sometimes I wish they would hold back on the suggestions/ideas. Sometimes what is said may have good intentions behind it, but is really just frustrating for me.

Yes, I've considered perhaps she's just small. Yes, her diet is rich in protein and iron. Yes, I know it could be really simple or really serious, and no I do NOT want to speculate about what it might be until I have her test results back and a direction to look in. As a mother, that's just too painful to go there. And it's not productive.

And finally: NO, I have NOT considered (and will not consider) switching Reagan to formula instead of breastfeeding her. This is the one that really gets me. Again, I acknowledge that those who have suggested this to me had nothing but good intentions when they said it. I just have heard this from too many people now and I'm started to feel offended, and I don't want to be offended because I like and trust all of the people who have suggested it to me.

Let me defend and explain my choice to breastfeed:

Breastfeeding is always the ideal and best form to feed your child. Formula companies have been long and widely criticized for their misinformation, unethical marketing tactics, and downright lies to mothers everywhere. I want no part in it.

There are legitimate reason's that some mothers cannot breastfeed, and should have no shame in it. There are also situations where formula is the only way a baby can eat, and there is no shame in that. I am NOT attacking or criticizing anyone's decision to formula feed their child. Instead I am defending my decision (and right) to breastfeed mine.

Nutritionally, formula can't even touch breastmilk. It's specifically tailored for human babies to optimize their health, growth, brain development, and nutrition. Formula uses cow's milk as a base, and cow's milk is designed specifically for calves development, not human babies. Even adding extra nutrients, formula still does not scratch the surface of the health benefits provided by human breastmilk for human babies.

Nutrition aside, breastmilk contains human stem cells. HUMAN STEM CELLS. Do you know what this means? Dr Mark Cregan (who discovered this amazing fact) explains:

“It is setting the baby up for the perfect development,” he says. “We already know that babies who are breast fed have an IQ advantage and that there’s a raft of other health benefits. Researchers also believe that the protective effects of being breast fed continue well into adult life.

“The point is that many mothers see milks as identical – formula milk and breast milk look the same so they must be the same. But we know now that they are quite different and a lot of the effects of breast milk versus formula don’t become apparent for decades. Formula companies have focussed on matching breast milk’s nutritional qualities but formula can never provide the developmental guidance.”

Need I say more? I already have enough worries about Reagan's health right now, and the LAST thing I would ever consider is taking away one of the biggest health benefits I could ever give her. It's a gift that will last a lifetime, it literally keeps on giving! Without a doubt, Reagan's health issues are despite of my breastmilk, and definitely not because of it.

I know I sound angry, but I'm not. And if you suggested formula to me and you're reading this, I have no hard feelings towards you. It's not you, it's me! This is an issue that I have researched extremely thoroughly, and have strong feelings about. I don't expect anyone else to know all the facts just because I do, and I don't expect anyone to agree with me. I will still like/love you the same no matter your opinion/decision.

All I ask is that you support me too.