525,600 Minutes

Well, we survived our first year as a family of five. I remember reading somewhere that your first year as a parent is definitely one of survival, and I remember thinking this was ridiculous at Jack's first birthday party. Sure there were major changes with Jack, least of which was the excessive lack of sleep but I feel Tom and I breezed through that first year. Who are these people that can't handle one little child?! Whoa...someone heard me and boy was I put in my place.
I have found myself responding to those who are amazed that the girls are already a year with one phrase..."it's been a LONG year." I do not mean for this to sound depressing or melancholic, it just simply is how I feel. We expanded our family from three to five, moved twice, three hospital stays since December, surgery and about five million Doctor appointments. So I feel entitled to feel a little relieved that we made it...intact.
This last year has truly been one of survival. It has had ups and downs, surprises around every bend. I have learned things about myself that I never knew before this year. I am sure these beautiful girls will continue to teach me about love and life and all of it's surprises.

I have a friend who writes letters on her kiddos birthday and I really like the sentiment. Cheesy?, For sure, but I am feeling particularly sentimental tonight...so here it goes:

Kate,
On the eve of your first birthday I am amazed and totally in love with you. You were so eager to come into our lives, five weeks early! You brighten my day, every day. As I was looking through old photos I came across ones with you and Mallory in the NICU, and I was amazed to realize that I had forgotton you came to us bruised and battered. You were born with a black eye and a large bruise across the bridge of your nose. You were so small (4lbs 7oz.) and to be perfectly honest you were the one we worried about the most. A full year later and you are so full of spunk! Your giggle is infectious and your smile so warming to the soul. I am delighted to be your mother and can't wait to see what you'll do next. Happy Birthday!
I love you beautiful girl!

Mallory,
On the eve of your first birthday I can say you have changed me for the better. You are so very special and wonderful. You have a soft nature that grabs the love of everyone you meet. You are so strong; stronger than anyone I have ever met. Life is going to hand you some curves and I want you to know that I will always be behind you, your biggest supporter. I feel truly blessed to have been chosen to be your mother. You have made me a better person, thank you.
I love you beautiful girl!

Wow...what will the next year bring us? I wish for health, love and happiness! I look forward to keeping you all up-to-date on our year to come.

Overwhelmed.

Overwhelmed is putting it lightly...lots to deal with, lots to catch up on, and lots of pictures to post. Below are 19 photos, and it was hard to keep it to less than 50! Life is slowing down a bit and I like it that way. For some reason blogspot is downloading my photos in draft form as computer language and not actual photos, so I apologize for the lack of description for each photo but I can't seem to find the patience right now to sort through the language. The pictures are not in order, again I apologize. So here you go:
















(the post below was written over the last couple of months, I have updated some)

Wow...well since last I signed in lots, and I mean L.O.T.S. have happened! Kate and Mallory are now 11 months old! How in the world did that happen?! Jack is learning about five hundred new things a day...currently he is insisting on calling Daddy "Tom". I get a huge kick out of it every time. Kate is crawling everywhere and has mastered getting up and cruising around..unfortunately she has not figured out how to get down by herself, so after being very proud of herself when she stands up the excitement is short lived as she starts whining to be helped down. Mallory is now rolling both ways and is really getting better at being a supported sitter. She has had a couple of stays at Children's Mercy. The long story short version is that she is a silent aspirator (two aspiration pneumonias in one month), has delayed gastric emptying, acid reflux, and urinary reflux...fun times. She has been a super trooper through all of the tests, needle sticks and overall sickness. After her last aspiration pneumonia we stopped offering her anything oral, all feeds are via a gastric tube. Amazingly enough, she doesn't seem to mind not having the oral feeds. I find that somewhat sad but know it would be worse if she screamed for a bottle.

We decided to get a GT/Fundo which is a port in her abdomen that we feed her through and the fundoplication is a surgery that will prevent her from refluxing and throwing up..a super bonus! Her stomach is still somewhat sore and I am hoping the healing is almost complete.

Well, I think I am done with the over-the-top catch up...hope you aren't too overwhelmed with the large amount of pictures and content..I will (I WILL!) not let it get this out of hand again!

Seussland

This year for Halloween we went with a theme for what everyone dressed up like. I figure there will be a time soon enough when everyone will want to really choose what they dress up as...and Tom and I will be unable to convince them otherwise. We had a really nice evening with an initial stop off at Grandma and Grandpa's house. Then onto the Leach's house to celebrate our 19th Anniversary with them. Julie and I were in grade school when we trick or treated at their house and Jane asked if anyone in our group babysat...the rest is history!

October

October has been a super busy month so far and it shows no signs of slowing down! We visited Johnson Farms Pumpkin Patch where Jack picked out everyone's pumpkins. He now likes to tell everyone he sees that his pumpkins are outside. We also went to Louisburg Cider Mill and enjoyed cider donuts and apples. Jack and Preston both enjoyed eating the apples and jumping around on the hay bales.


Kate asleep in her swing cuddling her doll.


Mallory looking super cute and super blue eyed!



Jack being watched carefully by Preston on the good form and proper way to enjoy an apple. Jack "painting" the house.


Picking out pumpkins.





For those of you that have not been informed of the goings on, Mallory's genetic tests showed a microdeletion of chromosome 10. The follow up appointment with genetics did not give us much new information but did give us the chance to discuss the implications of this chromosomal abnormality. This finding is a reason for her hearing loss, small growth pattern and her developmental delay. We are now scheduled for a full cardiac work-up (November 9) and renal ultrasound (November 9). During those appointments we will have some blood drawn to check her calcium levels and PTH (parathyroid hormone) to determine if she has any deficiencies. On December 15th we have an appointment with an immunologist. We will see what these appointments yield; most likely there will be some abnormalities found with these visits but we are going to do initial testing and determine if follow-up care is indicated.

We are working our way through the systems that have shown some abnormalities in other chromosome 10 deletion children, the severity of which is a broad spectrum. Right now it seems to be a wait and see kind of approach with her developmental delays. There will for sure be some. The literature that is available is miniscule at best and only shows a snapshot view of this disorder. We have no research that is longitudinal and therefore have an even smaller predictor for the future. Scary.

Mallory is talking lots and is moving all over...she seems to be just a bit behind Kate in her movements. She is a super happy girl and LOVES to be held and talked to. Thanks for all of the thoughts and prayers...we will keep you updated.

6 Months!

Two posts in one week! Amazing! Well we are officially at the 1/2 year mark with these pumpkins and I think have all adjusted pretty well. Went to the Pediatrician today for 6 month check-ups which included immunizations and flu shots. After a few tears the girls acted like nothing traumatic had occurred; they definitely take after their big brother who has always done amazingly well with Dr. visits and shots. Kate: 12lbs 2.8oz (<3%) 24.5inches (10%) and Mallory: 9lbs 15.8oz(<3%) 23.5inches (<3%)

Overall the appointment went well, just planning on fortifying the girls breastmilk/formula.

Here are some cute photos of Jack playing at the park, mowing the grass with Tom and overall just being cute.

The girls are getting to be so fun and interactive. On that note I have been putting them in their Johnny Jump-ups and they love to bounce around. Yesterday they each fell asleep in the jumpers, Kate in the morning and Mallory in the afternoon....they really are gorgeous, no bias here!

Pink Ears!

Well Mallory has received her pink hearing aids, and I must say they are super cute! It is amazing that at 5 1/2 months old she and Kate have such specific personalities...Kate is our tomboy of sorts, she L-O-V-E loves to be played with rough, to be thrown about elicits a huge smile and often lots of giggles. Mallory is more delicate and giggles with "softer" play...she is our princess, and as such the pink aids suit her perfectly.

The brand of hearing aids we got came with a gift for Mallory, a little otter/mouse-like stuffed animal that also has hearing aids. I hadn't thought much about these types of toys, but I do remember Cabbage Patch Kids having glasses; so why not hearing aids? I am now interested in looking for dolls that have the option to buy hearing aids...did you know that Build-a-Bear has this option? Pretty neat stuff.


Monday, September 20th was our genetics appointment for the girls, and although it was a fairly successful appointment I am disappointed to report that it has yielded about 10 additional appointments. We drew labs on Mallory and are looking to see if there is a gene mutation that is the cause of her hearing loss, the labs may take as long as a month to be completed. In the meantime she has a follow-up appointment with ophthalmology and has an appointment with Dermatology in a vascular malformations clinic to evaluate her hemangioma. Not sure I have mentioned before but she has this growth on her left shoulder that has continued to grow and is very vascular-looking. It is now the size of a ping pong ball and is very blue. The geneticist is wanting to get a closer look and make sure it is not growing into her spine and thus eventually effecting her range of motion. Sounds scary when I write it out but we are optimistic that this is nothing to worry about and it is, as our Pediatrician said, a simple hemangioma that will reabsorb on its own and leave no ill effects on Mallory.

We did not get any labs from Kate, and I think this is because there is not a chromosome/gene mutation that is thought to have caused her Microtia (is this right Molly?) The Dr. did mention that she thought Kate had some facial indications of a disorder known under an umbrella term as Ocular Aural Vertebral Spectrum Disorder. She felt that Kate has an assymetric facial composition, although slight, where her left side of her face is smaller. Her jaw, cheek bone and ear look smaller and because of this she is having her eyes checked. She will also be getting a scan of some sort (CT or MRI) of her cervical spine to see if she has any vertebral anomalies.

This is what is scheduled currently and I believe more appointments will be looked into once we get some answers from either the lab work or from radiographic studies. Wishing there was one test that gave us all of the answers.
The girls are developing on track. Kate continues to be very active and vocal, smiling all of the time. Mallory is also talking more and more and her smiles melt you whenever you are blessed to get one.

I'm trying, I promise!

Okay, so I mentioned in the last post that I would be updating monthly...well now that that promise has been squashed I thought I'd finally post the girls 4 month photos with their 5 month ones. Everyone in the Nelson household is great! Jack is super fun and talking more and more each day...some words we even understand! Kate and Mallory were not gaining enough weight and at their 4 month appointment the Doctor told me that they were needing to put on at least 1/2 ounce per day...they had put on 2 ounces in 45 days..not good. Fast forward 18 days and a weight check showed them up 9 ounces! Mallory is 9lbs 7 oz. and Kate is 10lbs 13 oz. They look great! Both are talking ALL the time now. We have ordered Mallory's permanent hearing aids, they are light pink (so cute), hopefully they will be here soon. Kate smiles all of the time, she is super laid back and literally bursts into a huge smile every time you talk to her. Mallory is a little more difficult to get smiles from, she definitely makes you work for them, but totally worth all that hard work. Genetics appointments on the 20th, stayed tuned for info with that appointment.
4 month photo, Kate loves to hold Mallory's hand.
5 Month photos were difficult because Jack really wanted to be in EVERY photo...
He decided that everyone needed a hat, even Mallory who was passed out from our photo shoot.
Jack and I had a day of fun, just the two of us. We started our outing at Blue Chip Cookies for some ice cream, Jack was not appreciative of this stop as he does not like sweets much. Who is this kid? I mean really, a kid that refuses ice cream and cookies?! After our unsuccessful sweets stop we went to Jumpin Jax for some bouncing fun...Jack had a blast and ran around constantly for 2 hours! We had a great day and hope to repeat these outings often.
And here is an older photo. The Leawood fire department showed up to our new neighborhood pool party, and as you would guess it was the hit of the party for most of the kids. Jack was on cloud nine 'driving' the "big truck" (one of his new and understandable words), until a meltdown when he was asked to get out of the driver seat.

Hope you have all had a wonderful summer, talk to you next month?