Bloody Hell!!

It's probably my favorite thing that Ron Weasley says in Harry Potter films. He says it repeatedly, and with such passion!

I just re-read my last two posts and wow, what DOWNERS!!!

My life really is not as dismal as the portrait of it would have you believe. I love my job, I mean, I get to deliver babies. I love my new friends in my new town. I love my family, and my kids are so great.

I'm a little obsessed with my health right now. I ignored symptoms for years, and now I think about it.....a lot.

So, had vein procedure done on Friday morning. Yeah, that hurt, surprisingly, since they told me it was no big deal and wouldn't hurt in the least. Lots of bruising, which surprised my doctor. Hello! you poked me like a pin cushion, what did you expect?! And then, there are the oh so attractive compression stockings which take an act of GOD to get over my ankle and up my thigh. They also cause this nice indentation where they cut off the circulation at the top, and cause a really attractive butt flap. No really, you should invest. Maybe I need to consider doing more squats? I may, or may not have screamed some profanities at them, and told them if they told me "last poke" one more time I would punch one of them in the face. Then, there's the 4x4in. numb square where they punctured my leg to place the cautery wire. They promise it will go away.....eventually.

My new dose of Gabapentin has decreased the burning in my feet...YAY! Unfortunately, I grew a new symptom this week, now I get goosebumps in patches on my skin in random places all over, and  more so when I'm working out. So it's this paradoxical sensation of feeling goosebumps spring up when you are pouring sweat from an intense work-out.

I decided to research my interesting new sensation, and it crops up from the autonomic nervous system. Basically, the gist of it is there are probably lesions in my spine. I can make it happen too. Tonight I ran three fingers up my legs, and a trail of gooseflesh followed them like ducklings following mother duck. SO WEIRD, and kinda cool, in a mad scientist, guinea pig kind of way.

I should really consider sleep

Jenn

Denial is wonderful isn't it? Last night seemed like a hot tubbing kind of night. DH turned the heat up on our relaxing backyard luxury, and after dinner the littles, DH and I piled in....

Ten minutes into it, I feel like I've been drugged I'm so tired, and the dizziness slams full force, and the feet burn more, and my chest hurts worse.

I finally give in and come into the house. I lay on the bed because I feel too weak to do anything else and realize my legs are tremoring. 

I feel so violated by these diseases. MS has come to my body uninvited, and violates me day after day after day. The tiny joys of life that I never thought anything about are being stripped from me. 

Pity party much? Why yes, thank you, I'll take a Olympic swimming pool size of pity for myself thank you. And, because I'm on call I can't take my full dose of Gabapentin because it's sedating. So, I get to stay up with my burning feet and chest pain all night long. I layed in bed wishing to get called in so I wouldn't be lying in bed awake all night. Being busy at a birth would distract me from all of this.

After twenty minutes or so of this I finally succumbed,  it's time to do what I like to do least in life, which, is ask for help. DH, will you rub my feet? Rubbing them doesn't actually do anything that changes the burning or aching, but it distracts from the burning and aching. So, he rubbed my feet for about 15 minutes. Then, I called my littles in and asked them if they would rub my feet, and they did, and rubbed lotion on them, and put socks on them. They filled up my water bottle, and just loved their mama who is feeling like a failure, and impotent.

How have I been SO blessed?

Feel the burn...

Found out today that I was taking double the dose of Gabapentin that my Neury wanted me to, and it still wasn't doing the trick.

So, medication numero 7 has just been added to my daily routine. I was feeling so disheartened by my symptoms. Dizziness, loss of coordination, burning and pain. And, knowing I couldn't see my Neury for FIVE MONTHS I was feeling dejected and defeated.

After speaking with a friend today I decided that I deserved better care, and needed an expert in Multiple Sclerosis treating me. So I opened my laptop this afternoon, and within a couple of minutes found Dr. Charles Smith, a nationally renowned expert in MS at Scripps in San Diego, CA. And, he will see me in two weeks, not five months!

Truly in the fog and frustration of this whole experience I feel so blessed right now. I must recognize the nudge I felt in Dr. Smith's direction. Sub-optimal care is not acceptable when you are dealing with a diagnosis like this, and now, I won't only get ok care, I will receive expert care.

So, two more weeks of burning and pain in my feet. Two more weeks of dizziness, and clumsiness at the gym. Two more weeks of chest and hip pain. He may not be able to solve it, but he will have a plan for my care which is so much more than I have now.

I also found out there is a name for the crazy jerky movements I make when I'm asleep. I found it in a book from the library about MS. The movements are called Periodic Limb Movement Disorder, they only happen during sleep, and you usually don't know you are doing it, but partners usually tell you about it. It described in perfection what has been happening. DH woke me last night and said did you notice that. Notice what? So, as I was falling back to sleep, I tried to pay attention, and sure enough as I started to fall back to sleep, my arm jerked, my leg jerked, and my foot jerked. I guess I'm a real JERK!! Snort, snort....

The long and short of it, learned something new today, and YAY ME, won the Specialist Provider lottery. 

Jenn

Little things like Lupus....

Love House, MD!

I just re-read my last entry which, was about one year ago. I read the line about kids killing brain cells, and sighed very, very, deeply. My memory loss, difficulty concentrating etc. has a much darker side to it.

Forgive the following rant, however, I plan to use this blog as a way to process and journal about this journey I've embarked on. Not all of my posts will be as depressing as this one......and I hope you will come back and follow me on this journey.

After five years of being sedentary after our son TJ was born, and died, trying to survive losing TJ, starting grad school, having 3 other pregnancies, working in and out of the home, having a spouse with what was thought to be terminal cancer, a child with Epilepsy, a child with Tourette's, and my youngest having multiple seizures last year; I decided last July to go back to the gym. I missed the old health conscious me, that loved exercise, and took care of herself. And, well to paraphrase my old chiropractor, when I decide to do something I jump in with both feet. His version was a little more colorful.

So, back to the gym I went. Immediately I noticed that 5-10 minutes after starting my workout, my feet would go numb. This happened 5 times or so, and I thought....CRAP! my back is messed up. I better go to a spinal specialist. 

Around the same time my chest started hurting after my workouts, and then just kind of hurt all the time. Since I was getting healthy I decided to go see my doc and check out some weird cramping in my feet, and some swollen lymph nodes in my neck. I figured the cramping, (which was the muscles in my feet getting stuck whenever I arched my feet) was nothing more than an electrolyte imbalance, and the nodes had been there for at least five years, and I wasn't dead yet, so they couldn't be anything serious.....right?

He ordered a neck US and found a goiter. Not only is that a fun word, a goiter meant that I had thyroid disease. And because they found swollen lymph nodes in several places, a bunch of bloodwork was done and I was eventually diagnosed with Lupus.

So I got to adopt a Rheumatologist into my life (who I love, love, love). Almost immediately I had a horrible flare. Crushing chest pain, extreme fatigue, severe joint pain, and sores in my mouth. A provider, (not my rheumy) placed me on a high dose of Prednisone, and after a few days, I could barely stand, or walk, it was almost impossible to raise my arms, I had to sit on a chair to put my makeup on, and would have to take breaks every 30 seconds or so, I could not brush my hair, and was blessed with cystic acne. I had tremors, and pretty much thought I would die, and kinda wanted to. Prednisone IS THE DEVIL. My rheumatologist agrees and recently promised to not put me on it unless it would keep me from dying. She hates it too! YAY Dr. K!

Through added testing I found out that I also have Raynaud's Syndrome (Ray - NOSE), and Antiphospholipid Syndrome. All autoimmune. Basically autoimmune begets autoimmune, so whichever one of these came first decided to have little autoimmune babies inside of me, and it feels like they are multiplying like rabbits. 

Because the numb, tingly feet weren't getting better, because of chest pain, and because my kidney labs were wacky, I also adopted a cardiologist, neurologist, and nephrologist, all AWESOME, in exception of the latter, didn't love him. 

Today I completed all of my cardiology testing, including ultrasounds, and stress testing. I've also been completing nerve conduction studies with my neurologist. I won't know if my heart is broken for a couple more weeks. They didn't see anything that made them send me right to the hospital, so that's good right?

What I found out from my neurologist is that I don't have peripheral neuropathy....YAY! No, instead it looks like I also have Multiple Sclerosis. So, next up is a brain MRI to look for the shiny white plaques that MS poops onto your brain when it melts the myelin sheath around your nerves. MS is rude like that.

As I've tried to begin processing this I've remembered back to symptoms that I've had and ignored for years like my inability to be in a hot bath without becoming short of breath and feeling very weak, a classic MS-y symptom. Doesn't everyone feel like that??? Yes I thought it was odd but did I mention I had two kids during graduate school. So, it got ignored. Plus, nerves were already dying I'm sure, because who ignores crap like that?

Around the same time as the numb feet started, I had severe muscle spasms in my feet. What does this look like? When I arch my feet, my muscles get stuck in that position, and it is PAINFUL.

Also, when I bend my hips for more than a few minutes, I have to use my hands to put my legs back into a normal position because my hips become severely stiff and very painful. 

When I get warmed up at the gym, I lose my coordination ability in my upper legs, and basically hang on to the elliptical for dear life because all of a sudden my thighs are clumsy and don't work.

DH just told me I jerk in my sleep. That and the feet getting stuck is called spasticity. Remember when your mom said to stop doing that because you might get stuck like that forever.....all this time I thought she was messing with me. I don't ever arch my feet anymore, except tonight because I wondered if that was still an issue for me. Yep, had to grab my piggies and return them to their designated positions on my feet.

My hands have been numb and tingly for years,  and I thought it was Carpal Tunnel. Nope, all part of what is becoming undeniably Multiple Sclerosis.

My nerve cells really are dying. I have to write EVERYTHING down or I forget it. So, when I forget things, it's not because I'm an airhead, or a flake, or indifferent. 

Today, as I sat in clinic contemplating my reality, and how silly little symptoms like my feet getting stuck in weird positions, and almost fainting in the shower, were ignored, I wanted to cry. Like, cry, and cry, and cry (otherwise known in my family as "THE UGLY CRY"). Where was my head, and why did I ignore these things?

I also found out that pregnancy holds off MS progression, and since I've been pregnant FOREVER, it kept this disease at bay. See what I get for having a hysterectomy?

When I was at the gym tonight, and my legs turned to jello yet again, I got ANGRY. Angry at this body that is betraying me. And the more determined I became to make them work, the faster I tried to go, the clumsier and weaker they felt. So like a disciplined child, I slowed back to a pace that felt safe, and recognized MS's power again.

I spent 14 years off and on in school to be able to get licensed, to finally fulfill a life-long dream; and now I have to wonder exactly how short my career will be cut by this betrayal by my body.

I have always been outgoing, spontaneous, vivacious. Will my kids know me as that person? How much of me will these diseases steal from me and my family? Will my youngest children's only memories be of a sick, disabled women in a wheelchair, who has angry outbursts, and slurs her words?

Uplifting isn't it? Lupus was something I studied in nursing school, learning just enough about it to pass boards. Same with Multiple Sclerosis. They were these mysterious diseases that didn't really hold my interest. Now they are my intimate daily partners. When will I have to start the toxic poisons that will delay the progression of this disease, but leave in their wake a weak, sick shell of a person?

So much has changed since my last post. This came into my life like a thief in the night. 

In six months I've been placed on six different medications. I went on strike last week, like a tantruming two year old and said "I'm not taking these STUPID, STUPID, STUPID meds", and then Lupus taught me better, or MS, one of them flexed their autoimmune muscles at me. About two days into my strike, my chest started to hurt, and my bone pain intensified, and so for the 2nd or 3rd time my symptoms pushed me back down onto my knees. So, I'm taking my damn medications! I'm doubling my Gabapentin today because my treacherous numb feet now burn so bad at night that it keeps me from sleep.

How many other autoimmune's will I get? How will they wield their power over my body?

So, what is a Lupie, MS-y girl to do to survive?  I turn to GOD, with renewed vigor, and I beg as only a desperate child can to guide me down this path with my gratitude in tact. That HE will help me to be gracious, and that my tantrums won't be too long-lived. That HE will help me see the good, and that the bad won't be so bad, and if/when it is, I'll learn from it, and grow from it, and become more like HIM because of it.

Hopefully it won't be another year until my next post, but if it is I really, really hope that the changes aren't as significant as these were, and that if they are, it will be for the better.

Jenn

Well, it took 3 years to remember my password

I used to laugh, ha-ha when they said pregnancy kills brain cells. Nope, here I am, I'm living proof. I am sitting here three years since my last post, and after some SERIOUS sleuthing to uncover my password to this apparent top-secret blog site.

The kids are three years older, Tony Jr., who was 8 weeks old or something close to that when I last posted is now 4….I think…..2009, 2010, 2011, 2012, 2013, yep, he's 4.

I was reading this post on FB the other day, "give a mom a muffin" Yep, that's me. I don't drink coffee, but substitute the coffee for OJ, or water, or green smoothie, because I'm healthy like that, and it's a perfect descriptor of every day of my life.

You might be asking yourself, what is this woman doing up at 0048 posting to a blog space. Well, my DH is OOT and I am filling my time. Fall asleep watching TV too early with kids, head cold, etc., wake up later with LOTS of energy, plus its quiet here at 0048.

A lot has happened since Tony Jr. was born in 09. Sammy was born 6/30/11, and Mielle (our super special surprise caboose) was born 3/2/13.

Tony Sr. was diagnosed with cancer last year, a big scare for everyone, but is in remission, and doing great. He retired from the Guard (yep, those are angels you hear singing), and he grew a beard (ooh la la).

I chase kids all day, am finally down to 2 in diapers, am doing everything I always said I never would, and I'm having a blast ( when I'm not in the closet crying, eating oreo's, hiding from the kids).

No one will ever say I had a boring life. I hope to keep living my life to the fullest. Surrounding myself with good friends, new food, great family, amazing adventures, delicious yarn, warm beaches, pleasurable reading, and lots and lots of hugs and laughing.

I hope you'll follow me while I document our crazy adventures. We have big plans, and are excited to share them, when the time is right.

Well, well, well...

I am so grateful today that Alex is alive. He fell through our coffee table glass several days ago, and caught himself with his arms on either side. There were LARGE knifes of glass sticking up from the carpet. We could have lost him.

Apparently little girls have "nipples on their vaginas", or so Libby informed me the other day.

I was getting dressed today and Libby says, I can see your BIIIIIIGGGGG tummy mommy. "Its ok mommy cuz you had a baby in there" Yeah, thanks sis, I'm feelin really sexy now.

I am grateful for my family and my life, and hope crazy moves out of my house sooner rather than later (Susan) Thank goodness for pharmaceutical companies need to make a few more bucks, and their invention of Lexapro. Depression bites.

February 14, 1992...saw my baby girl for the first time, I can't believe that that beautiful little baby is my beautiful 17 year old daughter. I love you Tiffiny, always.

Happy Valentines to all my loved ones. Hope you have a great month.

One of my favorite things

"The Kiss" by Gastov Klimt. Love this painting!

Tony Jr.

Here is our sweet, handsome boy at eight weeks old. I feel like I've been walking around in a fog for the past two months, man I'm getting old. He is a joy to have in the home and I'm enjoying him so much. I am also realizing how old I'm getting, I had so much more energy with Tiffiny.

We love him so deeply and are grateful for a healthy baby, and realize with painful clarity what a miracle a healthy baby truly is.

Our baby boy is here! Early of course

Well, here he is! Announcing Anton Allen Jr., yep Tony Sr. won the name game. Mom will be thrilled that he is not Coltin, which was my original choice. He was born at home 2:07 am on 8/2/09 at 36 weeks and 2 days. Adrianna Costello, my co-worker and friend won our online raffle. I am finally posting because I actually got 4 yes count them 4 blessed hours of sleep last night. I now understand why sleep deprivation is used by the military to torture people. He has had all the fun preemie baby issues, such as breastfeeding difficulties, jaundice, he had a really juicy eye infection, and had the joy of getting his tongue clipped because he was tongue-tied. Despite the odds, we have survived the first two weeks. After he was born, we were able to wake up Joseph and Libby to see their new brother, Alex and Ian (who fell asleep five minutes before the birth) said they'd see him in the morning.

We had the joy two days after his birth of our sewer backing up and flooding the laundry room, bathroom and hallway. Really, I couldn't expect to have things go completely smoothly could I, that would be asking too much of the universe.

Tony Sr. was amazing during labor and birth and was able to catch his son. Allison said that seeing Tony Sr. with me during labor was probably the most impactful thing to watch for her. Anyway, I have an even greater respect for our clients at the birth center after having my own and only natural birth experience, and wish I could have had it that way with all of the kids.

My sister Allison and my niece Amber were able to be at the birth, which was great. I am so grateful for them both and for how they took care of me.

Sorry if I'm rambling on, the brain is not quite functioning at its highest capacity.

I am so grateful to my Heavenly Father for all of his gifts, and we have so much gratitude for Tony Jr.'s strength and health, and relish in the thought that he got to hang out with his brother TJ over this last year, and plan how Tony Jr. would bring mischief into our lives. We see Tony Jr. smiling a lot (and no, I don't believe its gas) and wonder what type of conversations him and TJ have with one another.

I was smiling while I was feeding him the other day and Tony and I laughed and said that Tony Jr. and TJ probably tease eachother, like HA, HA I get to breastfeed, and Tony said yeah, TJ's response would be, yeah, but I get her boobs when they're perfected. Anyway.....again brain function......

Love you all, hope all is well.

Love,

Tony and Jenn and kids

Ready to go

I have traveled to California, seen my new nephew, and now my sister from Texas is almost here to see me give birth. I have bought everything I need for the baby, cleaned the house a million times, and now I wait for nature to take over. I expect to give birth in the next week or two given my history, so here I sit in my ultra air conditioned house sweating and waiting for the first contraction. The excitement and anticipation is so fun. This has been the easiest pregnancy physically for me out of the last three that I have had, and I credit that to not working 12 hour shifts on graveyard, like I was for the last three. I am still attending births at the birth center, and each birth becomes more emotional for me to observe, wondering if I have the strength and power that these amazing women do.
I am grateful for the blessing and miracle of a healthy baby, and cannot wait to meet this new person in our family. It has been an eventful month full of guests and parties, and now I settle down into myself, and reflect on my many, many blessings. I am grateful for good friends, and loving family, and can't wait to share the news with everyone.
Tony brought home roses yesterday....just because, and I am reminded often of why I fell in love with him.
Hope all is well, and hopefully the next post will be of a new baby!!!!

Jenn

Our 4th of July baby is turning 4

Well I did it. I'm 32 weeks pregnant but I got up this morning got Libby dressed and we got birthday pictures. Let's not talk about how long its been since she's had any professional pictures taken. I had to show these off because she is SOOOOOOO cute. Happy birthday sweet girl.

Big Boogers

Sooooo......I went to University of Utah hospital with Ian and Libby the other day to get the names of the nurses who took care of me last year during TJ's birth so I could write a thank you letter and give it to them on Saturday. Anyway......I am standing at the desk in medical records waiting for them to find something. There are two people on the other side of the desk and I look down at Libby because I realize she is squatting in front of me. I say "what" to her and she (very loudly) says EWWWWWW mommy you have a big booger in your nose. So what do you do? I just laughed wiped my nose with as much dignity as I possibly could and said thanks for announcing that sweetheart.

I had to go to the birth center to do some work the other day and we had one of our prenatal groups in session. I walk into the family room where they are showing a film about water birth, and the women in the film is just about to have the baby. Ian's eyes almost bugged out of his head, he says "what is wrong with that lady". I told him that she was having a baby and that it kind of hurts and thats why she was making those noises. The midwife places her hands on the baby's head as it emerges and Ian says again, "what is she doing to her and what is coming out of her body" So I tell him the baby is being born, and that the midwife is helping the mommy catch her baby. He looks up at me and says "mommy, I don't want you to have your baby like that, I want you to have surgery and get it out of your tummy"

Today we went to pick up Alex and Joseph from a summer camp program that the Utah National Guard has for kids. We are sitting on the bleachers watching a small program that they have put together and Ian walks up and says "its hot" (very loudly) I'LL JUST SIT IN THE SHADE UNDER YOUR BIG BELLY.

Wow, and they wonder why women are depressed and don't feel sexy, how could you with kids that can talk.

Remember who you are...and don't let it get you down.

Tiffiny said this to Alex the other day, and it just cracked me up. Another favorite is Tony's dad saying "come back when you can't stay so long". Anyway, I looked at my blog this morning and realized that I still had St. Patricks day going on. It's been a hectic month, with me on my behind in bed for the majority of it. Tony and I received the blessed news that our baby boy/girl is perfectly healthy in every way. Amazingly after we received that news, the cramping that I've been experiencing since the amniocentesis has wained. For those who would like to guess the gender of the baby please take part in our online poll at expectnet.com. The game is called XYor XX.

I had all the best intentions in the world to have Wrapped in Love organized during my one week break from school, but the time got away from me, and here I am in the midst of madness with school again. For those who love me enough to forgive me, please send in your donations, I'm sure the Lord will forgive at least one of your sins for this good work that you are doing.

The kids are doing great. Tiffiny is so excited about her trip this summer. Alex is getting really involved in boy scouts....finally. Joseph is brushing his teeth and taking a shower on a regular basis, which if you've ever had a nine year old boy is a HUGE accomplishment. Ian is doing really well learning his sight words, and read me most of a Dr. Suess book last night, most days I still want to strangle him. Liberty is the biggest DRAMA MAMMA i've seen since Tiffiny's days of toddlerhood, talk about a princess. I finally got my chore charts organized much to the chagrine of the children. Tony is doing really well at work, getting a lot of atta boys from the boys club for work well done. I haven't caught any babies in a while and I'm having withdrawals.

Well...I hope to continue to have a non-eventful rest of my pregnancy with a beautiful home birth at the end. I'm trying really hard not to step on the scale, and only step on it backwards at my doctor's appointment so I don't focus on my ever expanding backside too much. Just think, with this being our last, I have the rest of my life to lose the weight I gain with this pregnancy....maybe just one more Oreo then. Happy April, oh, and send me your blankets, no pressure!

Wrapped in Love

I wanted to send out an update to all of my friends and family and those they are willing to share this with. I am still working on refining Wrapped in Love. It has been difficult to work on it with my school schedule and health concerns with Joseph, Ian and our pregnancy. I will be on break from school between March 26th and April 6th. At that time Tony and I will design the "official" webpage, and set up our non-profit status.
I encourage all of those that would like to participate to please send your donations in so I receive them by June 10th. If you desire to make colored blankets please ensure that they are LIGHT pink or baby blue and funeral appropriate (please no Disney characters...etc). I realize this is nitpicky but this means so much to me and I want families to receive what I would have wanted my baby to be wrapped in. Any donation is appreciated, just please do not send used items. I need the initial donation ready by June 10th, so please have everything to me by then. Your future donations towards this will be tax deductible, and I apologize for the delay in making that possible now. Some have asked if this is a one time project, it is not a one time project, this will be a formal organization and be on-going.

Some of you have asked what the real need is for this type of service. I spoke to Carolyn Kasteleter from Angel Watch here in Salt Lake City. She is the director, and Angel Watch is a prenatal hospice program. She said that these items are much needed as a majority of Angel Watch's clients are low-income and at times cannot even afford a funeral and must have their sweet babies cremated. I cannot imagine Tony and I being forced into that position with TJ.

Please make the time to donate. Do not overburden yourselves with feelings of obligation, it is a personal decision and again any donation, even a one time donation is greatly appreciated and makes such an impact on families in despair. Please decide how frequently you would like to give; once a year on TJ's birthday, June 13th, I will personally visit the University of Utah Hospital NICU and donate items to them on TJ's behalf. We will be handing all other donations over to Angel Watch so that they can disperse these items as they feel they are needed and wanted.

Please feel free to include your name, address, and a personal note to the recipients when you send in donations so that the couple can thank you when they are ready. They will want to thank you. This is only a suggestion, and I understand that receiving recognition is not your motivation, but it helps the parents to heal.

I love you all, and invite you to share this idea with your humanitarian clubs and organizations. I can design a flyer that you can make available to anyone you would like to share this idea with, just let me know in advance, preferably a week or so.

Word of mouth is the best predictor of success. I will email you all once a month or so as a reminder. Again, this is not to make you feel pressured or guilty, but I am all too aware of how busy our lives become, and want to give out gentle nudges in the right direction every so often. Also, once our webpage is up and running please add us to your bookmarks, or favorites so we are easy to find.

Please help us to be a healing balm to these families in need.

Please feel free to look up Angel Watch, and speak with Carolyn to see if she has other needs. They are located at IMC hospital, their number is (801)698-4486. Please feel free to give people my email address so that they can contact me with questions/concerns.

Also, here is a list of prenatal hospice organizations nationwide if you would like to become involved more locally. http://www.perinatalhospice.org/Perinatal_hospices.html





Suggestions for flyer handouts:

Yarn and craft stores

Humanitarian meetings

Social group gatherings



Please ship all donations to

Wrapped in Love

c/o Jennifer Kuhlmann

9312 Red Haven Drive

Sandy, Utah 84094



With all our love,

Tony and Jennifer Kuhlmann

Who's Afraid of the Big Bad Mono Virus....

After several months of losing sleep at night over Joseph and his ever-falling white blood cell count we found out today that he had mononucleosis (kissing disease). Don't ask me who he kissed as a nine year old to get it but thanks a lot to whoever felt the need to share their yucky virus with my baby.
After considering the possibility of it being Hodgkins disease, Leukemia, or neutropenia (low wbc's) caused by his epilepsy medication... I am singing songs of praise that it is ONLY MONO.
We can hopefully wean him OFF his HORRIBLE new epilepsy medication that has turned my baby into Dr. Jeckyl and Mr. Hyde over the last couple of weeks, and return to our normal routine of just monitoring him for seizures.
Understand after a year like last year when one child is diagnosed with epilepsy, and the other a chromosomal abnormality that caused his death, MONO is a welcome reprieve. I will take MONO any day of the week over the other more joyous news we received last year.
Finding out Joseph had mono this morning totally made my day.
Shows you how warped your mind can become when you are so fearful of much worse diagnosis'.
This does not mean however, that you can all stop praying for us. My request from yesterday still stands, my elation over Joseph being diagnosed will subside, and my fears over Tuesday will again take hold. I will hold onto this feeling of relief for as long as possible though.

Love you all,
Jenn

Prayer...

I have used up all the humor I can to deal with the presence of my anxiety over this pregnancy. With our ultrasound and amniocentesis coming up on Tuesday, I am becoming overwhelmed by emotion. I am terrified of what they might find Tuesday during the ultrasound, and am all too familiar with how the air gets sucked out of a room and the energy changes even when nothing has been said yet, but when something is terribly wrong with your baby. You know before they tell you, and I have tried with all the will I have to not think about that moment of clarity when you know that your baby is not going to be ok. It is a very real possibility for us, and I have managed as well as I know how, but as our appointment date looms nearer I feel the fear of a future that I cannot escape if it is mine to have.
Please keep us in your prayers this week. I am not asking you to pray to change what has already been determined by genetics and the Lord, I just don't know that I'll have the strength to walk myself into that diagnostics room. I feel like I am walking into my own personal hell. Tony is out of town until Monday night, and I am feeling very scared and very alone without him here to share my feelings with. The added progesterone coursing through my body from the pregnancy is not helping things I am sure. I suppose one of the worst parts of it all is that they may not find anything on Tuesday, and then its another three weeks to obtain the amniocentesis results. In other words, things being ok on Tuesday does not mean that everything is ok.
I had a very clear image come to me about nine years ago of a little boy and girl holding hands. I knew that they were supposed to be born to me in this life. I thought that I was meant to have twins, but that never happened, and recently I have been terrified that TJ was the boy, and that this may be the girl, and they were together because neither of them had the opportunity to live here on earth, and were waiting for me together, caring for one another, until I returned to them.
The loss Tony and I felt when TJ died was so profound and the pain was to a depth that probably only another who has lost a child could fathom. The emptiness I felt was so acute that it blurred my fears and the reality of another pregnancy, and we chose to try again. Only now is the reality of our choice so clear. The possibility of having to say goodbye to another newborn baby is almost more than I can bear, my heart is so full of anxiety and fear.
I know the power of prayer, and I hope that you will keep us in yours this coming week. We love you all.

Jenn

March Madness

As we move into another month I continue to reflect on the events that have taken place recently for us. Joseph is weaning onto a new epilepsy medication because "we think" that the old one was dropping his white blood cell count. Well, now hopefully that won't be a problem but the side effect of this lovely medication is irritability and hostility, which we are observing in abundance. This was our child that was lost if you weren't sure to pay attention to him. Now his presence is very alive and up front in our home. We've considered not medicating at all because we feel that his monstrous medications are taking away our sweet boy.
Ian is being evaluated for his apparent inability to gain weight. He is 6 years old, and weighs in at a hefty 34lbs. We have tried every gain weight trick in the book, and yet in three years he has gained nothing. His pediatrician is ordering blood tests to determine if its an organic problem vs. a retarded mother who can fatten up Ian's little 3 year old sister to 43 lbs. but can't figure out how to make him gain weight.
We sold our home (we carry the note on it) in Stansbury Park to an acquaintence who has defaulted on the loan, and we are in the process of avoiding foreclosure, and not doing so hot with that I might add.
I took a test in Reproductive Anatomy and Physiology which covered a lifetime of information in a two week period, and only took it because I was sick of thinking about it, and passed (barely) but will still hopefully squeeze an A out of that class.
Our insurance provider decided that my midwife is "NON-Preferred" which means about $1400.00 out of pocket for the birth I want (not in a hospital). Yeah....
Am I evoking any pity yet, its what I'm going for here.
Oh, we are having an amniocentesis on the 10th of March for diagnosis or hopefully lack thereof of the baby. It will also be our first level II ultrasound. I am terrified as the reality is inescapable.
I think I'm handling things ok....considering, and know the Lord has more to do with that then I even realize.
Overall a really peaceful weekend day with the kids. Tony is at a shooting competition, and I am grateful for my many blessings and realize I have always become a better person because of my trials not despite them.

Jenn's breakdown

So......this Sunday in Relief Society was one of those meltdowns that make you want to move and find a new ward to live in. Of course out of the 8 months that we've lived here I chose THIS SUNDAY to sit front and center in Relief Society.
The name of the lesson this week was "COME WHAT MAY........AND LOVE IT" Well, I've had this baby on my mind incessently in the last week, worried about the possibility of it having what TJ had, and the possibility of another funeral. The teacher begins her lesson and incessantly kept repeating every couple of minutes, COME WHAT MAY..... AND LOVE IT. The first time she said it it was like a punch in the face, but I thought ok, I can handle this, just suck it up Jenn. The lesson was only made that much more painful by the stories that went with it. The difficult toddler...the spilt red koolaid on the newly cleaned kitchen floor. I'm sitting there thinking....what about your baby dying? I can handle COME WHAT MAY, but really do I have to LOVE IT?
I started crying almost immediately, my friend sitting next to me gave me a box of kleenex....an empty box, so I look at the box of Kleenex, look at her, and wipe my tears with the box....she looks at me and starts laughing...which was my goal because I thought maybe if I laughed, I'd stop crying. All of a sudden five little old ladies (we have a lot of those in my ward) are shoving those little Kleenex packages in my face. So we both sit there convulsively laughing IN THE FRONT ROW... and finally the teacher says, "did I say something wrong?" I'm still crying and laughing at the same time which physically I don't understand how that is even possible, and tell her...."no, just ignore me."
So she continues on with her COME WHAT MAY...AND LOVE IT barage, and I just can't stop the tears. We FINALLY get to the end of the lesson, and I'm sitting there thinking, I'm home free, I'm almost out of here, five more minutes, and then the freakin closing hymn starts. "I'll go where you want me to go dear Lord, I'll say what you want me to say." (which I'm assuming includes COME WHAT MAY...AND LOVE IT) That did it, the damn burst, and the true mortification began, there was no way to stop it then. We are at the last verse of FOUR, yes count them FOUR verses and I jump up and storm out of the room.
I assume everyone feels sorry for me, some just because they think my grief has finally drug me into insanity, and some because my family has to live with me.
Oh well....there's always next week.

February Newsletter

Tony and I have had three ultrasounds so far. A lot for this early but I fell last week and as a result have a small tear and some cramping. In an effort to keep from miscarrying I have been placed on bedrest until the cramping subsides. (Notice the many updates to the blogpage) Not a whole lot to do but read, crochet, do homework, tinker with my blogpage and yell at the kids.

Mom and Dad just left for Long Beach last night, Mama Jo finally gets to go be with Dad Russ. I had a flight to see her reserved for this weekend. I was too late. I have such vivid and fond memories of Mama Jo and Dad Russ. She was so independent and strong willed, things I admired about her. Those characteristics saw her through trials, and I see those streaks of stubborness in myself (poor Tony). Sometimes I wish I was more submissive, I'm sure Tony does too, but I'm the daughter of a red head, from Texas no less, I didn't have much hope.

School is school, and I'm starting to get the hang of being a stay at home mom. I'm learning how to really get to know the kids, and enjoy my time with them. I'm starting to see how important my attitude is and how it affects the feeling in our home.I love you all, and am so grateful for my Heavenly Father, my wonderful, loving husband, and our beautiful family. I would be lost without any of them.I am grateful for good friends who love me when I don't deserve it, and take care of me, when I won't ask for help.

Happy February