2 Corinthians 1:3-5

2 Corinthians 1:3-5
Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ

Thursday, June 21, 2012

Hello??? Is anybody there?

  I was recently asked why I don't update this blog very frequently (at this point I would say there are dust bunnies floating around) and I suppose there are a few answers to that question.

First and foremost, we are now in teenage land and extremely busy with the taxi stage of  life.  Facebook has taken the place of many of my family updates, as well. Also, I am so BLESSED not to be sitting in waiting rooms and hospitals with tons of time on my hands to do nothing BUT update the blog, while Aubree is sleeping or having a procedure done. AMEN!

Secondly, I suppose I don't update as often, because we are past the point of "living" with PVT on a daily, weekly or monthly basis.  This is a place I didn't think we would ever get to at times, and something I truly do not take for granted.  So many others are not as blessed as Aubree has been. I have friends whose children have had several failed attempts at the Rex Shunt or other types of shunts. I also know adults that are not candidates for shunts and have to live with the affects of this condition without many treatment options.  I praise God that Aubree's shunt is open and that she does not have to live in fear of when the next bleed will happen.  My heart breaks for families that are faced with this reality and I keep them in my  prayers daily. 

While I know that there is a possibility that someday the shunt could narrow or close and that there could be challenges when she gets married and decides to pursue starting a family, we will cross that bridge when we come to it. We leave for her 5 year post Rex testing and checkup next week, and I must be truthful, it always makes me a little nervous.

Which reminds me of a verse:
Matthew 6:34
“So don’t worry about tomorrow, for tomorrow will bring its own worries. Today’s trouble is enough for today."

So that is exactly where we are in Aubree's PVT journey...today.  We are living for today and not dwelling on what happened in all of those yesterdays.  I can't change anything about the past and I can't do anything about uncertainties in any area of my life for tomorrow. Yep. Today is a pretty good place to be.  The only time I try to revisit those yesterdays, is when it can benefit someone else going through a similar situation.  That is the blessing out of the whole situation...more for ME than for them!

I have had the privilege of communicating with parents from all across the U.S. and several other countries, regarding PVT and the Rex Shunt.  Some of them have found me through the Parent Advisory Board at Lurie Children's Hospital, the PVT Facebook Group or from this blog.  I have gotten quite a few questions, regarding PVT.  Everything from procedures and testing to dealing with every day life with a chronically ill child.  This has inspired me to take this blog in a new direction.  

While thankfully, I only have yearly updates about Aubree's health, I thought I would start answering some of the questions by posting about different lessons that God has taught me along the way. I pray that I can continue to be an encouragement to others who are still in the midst of dealing with PVT.

If you have any questions that you would specifically like answered, please feel free to email me. While some medical issues are really kid specific, I would be happy to share how we addressed issues in our circumstance.  Even though I might not update here often, you can always email me, or friend me on Facebook.  If you send a Facebook friend request, please jot a quick note with something about PVT, so I know why you are sending the request.

God Bless!

Monday, December 22, 2008

Merry Christmas Update

Well, I don't think life is ever going to slow down, but I am ready for some much needed days off to spend with the girlies! Photography has finally slowed down and I am looking forward to some time to update my website and get caught up on some forums and such.

Our house has been very busy with 8 kids here everyday plus my own there is hardly any down time. Most days I feel I can really relate to the woman in the shoe! Add in the overgrown dog that looks more like a bear than a puppy and life is always interesting! She is doing better all the time, but I look forward to the day when she does not think it is amusing to run off in 20 below weather!

We took Aubree back up to Chicago for a check up with Dr. Superina last weekend. She is doing well and the ultrasound and blood work looked good. He is not quite ready to release her to once a year yet, but we don't have to go back until June. Hurray! I feel so blessed that we do not have to make so many trips to Chicago anymore! We planned on staying one night, since the girl's wanted to go to the new American Girl Store so 2 of them could spend some birthday money and we usually spend at least 7 hours at the hospital, but ended up extending our time away from home. I had the flu the 2 days before we left and Ashlee started in at midnight on Friday night. By 6 am Autumn was joining her in the bathroom and by that evening, Alyssa was the next victim. There was NO WAY we could throw those kids in the car! That would have been inhumane, not to mention messy!

We made it back on Sunday, 45 minutes before their Christmas program at church. Everyone was filling better, but Ashlee only stayed up on stage for a little while. Autumn had her first solo debut and did so well! She would not let me listen to her practice, so I was very pleased to listen to her sing! We had our Christmas Cantata at Westminster last Thursday and finished up at church last night. The children's choir sang one of the songs and they all looked so beautiful!

I feel a little behind, since I have not been able to bake ANYTHING yet, but I plan on getting caught up today. I have an extra school-ager this week, so I thought it would be fun for the girls to make salt dough ornaments. We haven't done it in years! After that we can start baking all the usual Christmas cookies and of course the cream cheese and beef pickles, which are a family favorite. This year we are focusing on a fancy hor'derve meal for Christmas. I think it will be so much fun. We always watch A Christmas Carol with Alastair Sim. We always laugh at the same parts, one of which is "The pudding, Oh the pudding!" I thought my dad would get a kick if we made the Christmas pudding, but after consulting with my brother and finding out how involved it was, I nominated him and Karen to make it....don't know if that will happen or not, but I just can't fit it in with everything else! Besides, it would be a lot of work for pudding that no one would like! :)

These days I find it hard to find balance. I am sure every mother finds it hard to balance being a wife, mother, work, church and home responsibilities. I feel like we are always running and the girls are growing up too fast! My goal in the next few months is to try to slow down and focus on spending more time with just them. We fit it in where we can, but I really want to let a few more things go so I can spend more quality time with them. I have definitely reached the stage in my life where I don't mind if one of them crawls into bed with us, because I know that all too soon, they won't be doing that anymore. They are so precious and I am so blessed to have them.

God has continued to be so good to us. With the recent news that a family member has lost their job, I am once again reminded of His loving care for us. Things have been tight, but He continues to provide for us always.

I am looking forward to seeing some extended family over the holidays and meeting my cousin's baby for the first time! Our family is growing all the time and for once I am not the one "adding to the surplus population", as Scrooge would say! It has been so much fun watching the new babies arrive!

Tuesday, October 21, 2008

Aubree's Story At Children's Memorial

I got an email today and Aubree's story is up on Dr. Superina's website. She is the cover story, so I guess that is her claim to fame!

Thanks to all of you who prayed for her over the years and especially during 2006. This surgery did so much for her and her other conditions have been rather dormant so we are just so happy to be back to normal life! Whatever that is! God truely healed her and I am so grateful!

Here is the link

Tuesday, October 14, 2008

Summer update???

Ashlee's bad reaction to a bug bite....she seriously looked like the poster child for a prevent child abuse campaign.

Well, I have been CRAZY busy with hardly a chance to catch my breath. I am now going to attempt to "sum up" the summer and start of the school year as quickly as possible.

Aubree's health-I am pleased to say that Aubree is doing great! She has not even missed ANY school this year! We are scheduled to go back in December for the usual blood work and ultrasound, but for now she is doing just fine on the baby aspirin to to keep her blood thin and some nasal spray to keep the sinus symptoms at bay from the symptomatic Cystic Fibrosis Carrier thing. She was so worried about missing school since Jr High is a little more demanding and she did not want to miss anything. So far so good, except for that pesky computer class.

Someone from Dr. Superina's Office asked me to be on a parent advisory board in their Parent Wise program for parents of Rex Shunt patients. I am very excited at the opportunity to share the experience from a parent's point of view and help other parents in any way I can. I have already spoken with about 6 families since she had her surgery and I know how nice it is to speak with someone who knows what you are talking about! The procedure was still so new when Aubree had it done that there was really no one available to ask all of those questions. I feel so honored to be a part of it all!

Feeling Old- After a breast biopsy, being hospitalized with a lemon sized ovarian cyst and barely hanging on to my ovary and getting my wisdom teeth out, I REFUSE to start a category labeled "Shelly's Health Updates". I must be getting old or something, but I really just don't have time to stop my life for such nonsense! All I will say is, do your monthly exams and don't babysit all day in excruciating pain and then feel guilty for calling off 2 hours early to be hospitalized. Oh yeah....if you have your wisdom teeth out, DO call one of your friends on the way home so they can laugh at the way you talk, because when you can feel your mouth again it will not be so funny....and DO NOT babysit a bunch of kids the next few days after. They really do not want to see you sitting on the couch with that silly ice pack on your face while they play around you. Enough said.

The Dog-A horrible picture...that does NOT show her true size, but have you ever tried to get a horse with the energy of a kangaroo to sit still? I didn't think so...

The dog is a 70+ lb sweet, but curious puppy that is full of energy. We might even keep her if she stops chewing up my bath puffs....

School- Ashlee is adjusting to Kindergarten quite well although I must say I miss her company terribly. Not that I am alone, but it is just not the same without her here. Alyssa is enjoying 3rd grade and has made a new friend. Ironically her mother and I had several mutual friends and she also lives right behind us. Unfortunately they are moving up by Chicago in the next few weeks. :( We are planning to visit when we have to take Aubree and it will be nice to have another place to stay! Autumn is taking the responsibility of 5th grade very seriously and is playing the Viola. She has done fairly well with it and is good about practicing. She has been such a good big sister to Ash when she cried EVERY day those first couple of weeks. She has even played with her at recess. We have weaned Ashlee off of her, because I could tell she was getting weary. Now she has been staying in to talk with a girl that broke her leg and cannot go to recess. She remembers all too well what it was like when she broke hers! I thought it was so cute that she was asking if I thought it was OK if she went out to recess 2 days a week and stayed with the girl only 3 days. She is such a sweetie!

Work- Since school has started I have added more kids and am up to my eyeballs in little ones. The days have been busy and I can't seem to get laundry or other house cleaning things done as efficiently as I used to. Those chores spill into the evening along with the usual dinner, dishes, bath, bed time stories and getting ready for the next day. I have been so swamped with photo sessions! I am thankful for the income, but sometimes I wonder what I have done to myself! I am booked up clear to December 1st...overbooked some weekends, and have had about 2 sessions to edit by the time I take another one. I do love it, but there is just not enough time in the day. I forgot what it is like to relax....but who am I kidding? I am not a relaxed person! I cannot sit and watch TV without folding laundry, making hair bows, cleaning out a drawer, editing photos or fidgeting with something! I am looking forward to winter time and spending more time on crafty things with the girls. They LOVE playing outside and I never make them come in until they have to. They have never been couch potatoes and I want them to enjoy the weather while they can.

Well, that really sums up most of it. There was so much more time for blogging a when I was sitting in hospitals with Aubree all day, so I am HAPPY to say that I am too busy to blog!

Saturday, June 7, 2008

Mini Post #5- Trip to Chicago Emergency Room

I was really hoping that my last post under this catagory, would be our followup for her surgery, but I guess not! Well, we thought that Aubree was over her episodes of parotid gland swelling, but apparently that is not the case. She started having some swelling on the left side on Thursday. It was about pea sized, the by Friday it was dime sized, but not sore. By Saturday morning it was nickel sized and getting sore. Saturday afternoon we went to see my sister's new house and then her and her fiance took us to IHOP to celebrate. Aubree had been complaining of some soreness and when she tried to eat she started swelling. By this time it was over golfball sized and I knew that we were in trouble. We went home and I spoke to the Immunologist on call. She called her doctor, which I really appreciated since he understands the drama we have gone through with trying to diagnose this, and we both agreed that we would take her on Monday, because according to other episodes, it would still be there and we didn't think it warranted immediate care. Well, but Sat. evening, it was over appricot sized, don't you love the analogies, and she was feeling much worse. She had a really rough night. I stayed up with her until about 1 am and then went to bed. She came in at 4 am and it was even bigger, swelling behind her ear and onto her cheek and she could barely open her mouth.

The doctor that sees her now for her IgA deficiency, missing part of her immune system, has never seen her when she was swollen like this. We have been with him for about a year and she has not had an episode since then. He stated that the next time it happens he wanted to see her to determine for sure if it was her gland and not a lymph node. She was really feeling bad, so Aubree and I loaded up and headed off to Chicago. The on call doctor came in to see her and then called Dr. Fuleihan to get his opinion. He ordered some more blood work to test for autoimmune disease and to confirm that it was the parotid gland and then sent us on our way. The on call doctor was awesome. We saw 4 doctors while we were there and I was very insistant that someone talk to her doctor so we would not be starting at square one.

When we came home she started in with the fever, which is typical for her. We tried the usual comfort treatments of Motrin, warm packs and sucking on hard candy to get the saliva going out of the gland, to no avail. She started feeling better by Wednesday and is doing great now. She still has the fatigue, but it does not seem to be as bad this time. Her doctor called last night and stated that the tests did confirm that it was her gland, there was no sign of autoimmune disease and that her white count was not elevated so it was inflammatory not infection. He said that we were pretty much back to square one with the whole thing. He did have a fellow doctor from Israel that has done some studies on parotid swelling in IgA deficient patients and he is going to contact him to get his input.

This condition is the same one that she had all of the home IV's, chemo drug shots and steroids for and that ultimately ended up with us at NIH research hospital in Maryland. The only diagnosis we have ever gotten was Sjogren's Syndrome, which has since proven to be false. So far, research says that it is a rare inflammatory condition that has no treatment, cure or prevention. At least we know what to expect with it all, but I do wish we could make it more managable for her. There have been studies that indicated that some children grow out of it when they hit puberty, so maybe that will be the case. I hope so!

She is doing much better now, which we are so thankful for. We are so blessed to have such an awesome doctor. The on call doctor even called me with some research that she had found as well.

We are headed up to Chicago again on the 13th and will see her surgeon for her 1 year followup from her Rex Shunt. I can't believe it has been a year! She'll have the usual ultrasound and bloodwork and I think we will be cleared by him to only go up once a year from now on. Hurray!

Mini Post #4- Aubree's Divalicious Birthday

Well, the next on the list of things to post about, would be Aubree's diva slumber party. We gathered 6 of her closest friends and did manicures, pedicures, facials and we had the famous Holly do their makeup. The girls were quite divafied and had a real blast. They kept Holly and I hopping, but we had a blast!

Of course, Chef Michael made dessert. What party is complete without a birthday trifle in a fancy parfait glass.

The best part of the whole thing was when Aubree opened her gift from us. We told her that she could get a cell phone when she was getting ready to go to Jr. High. Jr. High is further away from home and with the lack of payphones, we felt it best that she could have it to communicate with us. MY HOW TIMES HAVE CHANGED! On one hand I find it utterly rediculous that a 12 year old has a cell phone. On the other hand, I remember countless calls to my mom from school, when I forgot something, needed to be picked up...she forgot to pick me up...etc. Well, she was opening her gifts, when I had Michael call the phone, that was placed in a purse inside one of the gift bags. All of the other little girls with cell phones reached for hers and Aubree kept looking around to see where the noise was coming from. The video tells the rest of the story. Turn up the volume to get the full effect.

You will have to follow the link here to the video since I can't get the silly thing to work right!

That was priceless!

Wednesday, June 4, 2008

Mini Post #3-Memorial Day Tradition

Every Memorial Day we all go to the Memorial Day parade. I am not sure when we started going...I don't remember not going, but I do remember one special Memorial Day. We were standing on the side lines, my dad wearing some kind of Vietnow hat or something, when this guy came up to my dad with tears in his eyes. I may not have the story totally straight, but he seemed to remember my dad from when they were enlisted and he had tears in his eyes. He gave him a big hug and then pulled him off to march with him. I went too. I must have been about 11 or so, because I remember wearing my light weight Crusader jacket and my red and white piano key sunglasses.

Ever since then my dad has always marched in the parade and in recent years he has joined the American Leigon. A few years ago my sister got him a new uniform, complete with dress blues. He looks so hansome. He usually shoots one of the guns in the 21 gun salute. We always see some old friends and this year got a picture together with our dads.

I have always loved listening to his war stories and am so pleased that my kids understand the importance of honoring our veterans. For the past 12 years or so, we always take my dad to lunch. We usually go to Bob Evans, but this year we went to a Mexican restaurant...which we were ALL much happier with. :) Hey...it's his day! It is alway such a great way to honor my dad.

My little nephew, Anthony, got the honor of attending his first parade this year. He didn't even cry when they shot the guns.

Thanks dad!

The Hartgirlies