Update

Thank you so much for praying. Victoria had a good day today with no seizures. She is on a little medication for them, but we are already weening her off of it. We are so thankful.  She is up sleeping peacefully in her new sleigh bed (will post pics later.)
We were sad today to eat at our famous Roosevelt Diner for the last time today as they are now officially closed. Sure was nice while it lasted though. Enjoy your day of rest tomorrow, as we are once again reminded that it is not by works that we are saved, but by resting in the finished work of Christ, and that He is the one that sanctifies us and set us apart for Himself. Blessing, Bruce

Prayer appreciated

Just a short update. Victoria started having some small seizures today. We don't know if it is related to our trip to Fargo where her shunt was adjusted, or if it is just par for the course for someone with her condition. It is quite common for children with HPE to be on anti seizure medication . Our neurosurgeon wanted us to get a Ct scan done tomorrow, so will go to Roseau for that tomorrow. So would appreciate your prayer for wisdom and trust in our great God and Savior. The Lord looketh from heaven; he beholdeth all the sons of men. From the place of his habitation he looketh upon all the inhabitants of the earth." We are so blessed to have a Father that sees us and cares for us.  Thanks everyone. Blessing, Bruce

Spring...piano recital and time for picnics.

On Saturday evening, April 17th, at 7:00, Reuben, Elizabeth and Matthew had a piano recital.  I think they were a little nervous...but they still did well.  Reuben played "I am Resolved" and "Calypso Carnival".  We have seen so much improvement over this year!

Elizabeth played "God Leads Us Along" and
 "Minuet in G".  She is also preparing to play one hymn with the congregation at our upcoming Share Night.

"For the Beauty of the Earth" and "The Lonesome Pine" are the songs that Matthew played. They all did a little practicing ahead of time on the piano at the church, as it is a little different than the one they normally practice on.

Friday, April 16th, we had our first picnic!  The weather has been unusually warm this spring...completely opposite of last year.  Our tulips are 6" high, daylilies are coming up, the lilacs buds are quickly growing, and the rhubarb is making me think of Jean's rhubarb cake.  On Friday, I also experienced something else...soft grass, prickly pine needles, soft warm garden dirt, smooth hard driveway surface and the rubber of someones running shoes on top of my feet.  Are you wondering how this came about??  With my favorite summer shoes, of course. : )  (which are bare feet...can you guess who is writing today??)

Some more picnic photos...on the menu:  pepperoni or taco pizza, coleslaw and smoothie...along with plenty of fresh vitamin "D"...thanks to the sunshine. : )

                  Easter Sunday mommy was home with three little girls...we made Resurrection Buns.

The buns are made with a marshmallow on the inside, which melts, and leaves the bun empty.  JoAnna had so much fun making them, she wanted to make them every day the next week.

Tomorrow we have an appointment with the neurosurgeon in Fargo.  I think they want to decide whether the shunt needs to be adjusted or not.  The shunt is under her skin, but they can adjust it with a strong magnet if necessary.  Victoria is a very content baby over all, and has become so much easier to care for since some of the CSF has drained, making her head much lighter.  I can carry her without a pillow to stabilize her head now...and that makes cuddling so much easier!  We praise God for His goodness...and look to Him for strength for each day that lies ahead.

  "I will bless the LORD at all times: His praise shall continually be in my mouth...O magnify the LORD with me, and let us exalt his name together.  I sought the LORD and He heard me, and delivered me from all my fears."

New Things

"Therefore, if any man be in Christ, he is a new creature; old things are passed away; behold, all things are become new."Hope this post finds every one well today. I was thinking about new things the other day, so thought I would share some of the "new things" happening around our home.

 

 A new year for a new garden. Sure is fun to "work" in the garden and look forward to all the new things God will give us this year.  (this photo was taken on March 31st...We live in the FAR NORTH...we have never tilled this early!)

 Our little princess got herself a new swing. We were looking at getting it new, but someone was selling one for about half the price of new. She does like it. We are working on putting in "new straps.

New pictures of Victoria. Her face has changed so much, and she seems to be doing well. We go back to the neurosurgeon next week for a check up.

Don't you just wonder what babies think?

 

We recently lost our winter dog (we dog sit for snowbirds), so here is our new dog. The girls somehow got playing fetch...here Esther is teaching Joanna how to fetch a spoon for her.

With Benjamin buying our car, we had to look for another one, and this is what we found. A 97 Park Avenue with 116,000 miles. Seems to be a nice car so far, and it gets about the same gas mileage as our little 4 cylinder. 

I don't think I have had a car with this many bells and whistles, even has heated seats. Its only something useful for this time on earth , so I don't "treasure" it.

 

Have you ever had your wife make something for you and then ask you what you think was the "new" ingredient?   My reaction....you put what in this?????? Now of course, we were not told of this secret recipe until after we had eaten it.

 

 Esther seemed to not mind it at all...I think this must be her new hairdo.

 Here it is, our wonderful breakfast pastry, and the secret ingredient is.....now you must understand, I have full permission to disclose this family secret, and we will be putting them on the market soon. So, anyone guessed yet?  If not, the letters are MM.

Finally, we are looking forward to the new heavens and the new earth that God will make. This first one is fantastic, so can't imagine what the next will be like. What a blessed hope we have. Hope you are having a peaceful day.

Oh by the way, the new ingredient was "mother's milk" :)))))  Now, where's my blankie..googoo gaga!

(By the way, the top secret "MM" was just in the pastry...not the frosting...though I'm sure it would have worked!  : )  )

Home At Last

Hi Everybody. I'm sure you must have thought that I have forgotten all about you, but I haven't. Its just , well I had a really busy week.  Last Monday the warden...I mean the nice doctor signed my release papers and said I could go home. Yeah, I missed home alot, especially my brothers and sisters who just love to kiss me. My head is feeling alot better now. It used to measure 68cm, now its about 53cm. They were really nice to me at the hospital, but home is where I like to be. I've sent you a few pictures of me in the hospital. On some of them I'm not wearing a hat, so my head looks kinda big...I'll have to ask God why he put me together like that someday. Don't I look peaceful?

 

Here I am with my pa. Notice it says, welcome to Victoria's (that's me) room. They gave me my own room, though I let mommy sleep with me ...I guess she didn't have anywhere else to sleep (but you know what, I kinda liked having her there)

This was the hallway just outside my room. If you go through there and to the left, that is where I stayed. Pretty cool eh (my daddy says I'm part Canadian, so that's why I talk like that)

  

You must think that all I do is sleep...Nope, I also like to eat...actually, I love to eat.  Ma's milk is the best!

 The nurses said that she had so much stored up in the fridge that maybe they should make cheese out of it. We thought we would call our new business "Lindo Lakes".  (This photo was taken before surgery)

 

Notice the scar

on the back of my head?

That's where they put the shunt in...it hurts sometimes, 

but I'm getting used to it.

Here I am all wired up. The one tells them how fast I'm breathing, the other if I'm getting enough oxygen (whatever that is) and the other one tells if my heart is beating right. But it must not work right cause these alarms and lights kept going off, hope they get it fixed for the next person. Mommy put me in a heart cause she loves me so much.

Now, here was the best surprise of all. Daddy got a new car , and this is what we rode in to get home. ...okay, so maybe it didn't look exactly like that  :))), but he did get a new car. The reason is that my big brother Ben bought his other one so he could have something to drive to work in . Ben went away today to start his new job tomorrow at Digi Key in Thief river..sob sob, I'll miss him, but he will come home every weekend, so I'm happy about that.

Today we celebrated Easter, the resurrection  of Jesus. I sure can't wait to meet Him someday. I hope you all love Him and thanked Him today for all that He did and keeps on doing. Someday, we will see Him come through the clouds, just like He said He would, but until then, live for Jesus every day, cause today is a gift from Him. Blessings, Bruce.

Planning on heading home Monday! : )

Saturday Victoria was moved from PICU (Pediatric Intensive Care Unit) to the regular Ped. room we had had before her surgery.  The only moniter she still has on is on her foot, and measures her oxygen and tracks her heart beat.  It looks like a little bandage around her foot with a red light.  We actually had a little cuddle with her on Saturday.  The only pain med she's getting at the moment is tylenol...though I think that I saw a nurse give her a little sucralose last night...  The Dr.s who came in this morning, said that the stitches are looking good...they are going to change the clear dressing tomorrow.  She has about a 3" incision on her head...behind her right ear, and another not quite as long in the abdominal area.  They measured her head before surgery, and got a measurement of 68cm.  Saturday morning, they measured, and got a measurement of 62 cm...today it was just over 61 cm.  The shunt they put in can regulate the amount of CSF that drains, and to avoid other complications, they set it so that it is draining quite slowly to begin with.  They intend to change if from 2.0 to 1.5 tomorrow so that it will drain slightly quicker.  Then in two weeks or so, they may
change the setting to 1.0, depending how the fluid is draining,and how her body is absorbing the CSF.  The large drop in size after the surgery is probably due to the fluid which had built up between her skull and the skin over it...some of that would have drained of during the surgery.

If all goes well, we plan on heading home Monday, the 29th of March.  We are so grateful for all of your prayers...please continue to keep us...and little Victoria in your prayers.  We continue to be thankful for God's goodness...we know that His plan is perfect...and that he continues to do all things well. 

Victoria's Tale

Well, I will tell, you, I had quite the day today. I had a great nights rest, then Mommy fed me at 7am (so I am told, I'm not too good with numbers yet), and that was great, but for some reason she didn't want to give me any more that morning. I cried and fussed and fell asleep and did all my usual tricks to get more milk, but mommy must of been having a bad day or something. Anyways, around 1:15pm, a lady in a funny green suit and hat came and got me, and then someone pricked me with something. After that, the room started spinning, and I can't remember much after that. They tell me that some old guy (hey, everyone looks old to me)made a cut in my head and stuck a valve and a tube in there (maybe playing hide and seek..boy, they're not going to find it in there), and ran the tube all the way down into my tummy. I can do the neatest trick of making this water stuff go down that tube. I already feel a little better, as my head was starting to feel a little pressure. Oh one thing I forgot to tell you, they sure like tubes around here, as they put one in my nose and down my throat ...yuck. When I woke us, I definitely wanted to get that thing out of there as it really was starting to bug me. Well, they took me us to a new room now called ICU (I think it stands for intelligent children undercover) and I have alot of new people running all around me. I finally got to see mom and dad, boy did I miss them...they sure do love me, I can just tell.. But I could tell that mommy had been crying some...maybe she got a tube stuck in her throat too. Finally, they took most of the stuff off of me and I am breathing on my own again...wow, does that feel good.
So, surgery went really well. The surgeon was pleased with how things went. Victoria has a little oxygen in the nose still, of of course pain medication, but is  doing really well. The usual hospital stay after this is a couple of days, so maybe if all goes well we will go back home on Sunday. Already we can see a difference in her head. Hopefully they will get it regulated well and we can stay away from infections. Needless to say, it was a great day. The emotions have run the gamet, but we are doing well. Thank you all so much for praying for us. God is our refuge and strength, a very present help in time of need. Blessing. Bruce

Update

For those of you who check the blog in the morning, we just wanted to let all of you know that the surgery has been postponed till 11:45 this morning.

Victoria's Surgery

Hi all. Its late and I need to get to bed, but thought I would write a little about our day. We were up at just after 6 as our appt. with the neurosurgeon was at 8. We met with his assistant first, then doc. He let us know of all the dangers ect, for which we were glad for the info, and after some discussion decided that we still wanted to go ahead with the shunt. He agreed (praise the Lord...this has been a long two weeks to finally get that answer), and schedualed us for the following day. Because of her heart murmur, they decided to admit us to the hospital today , which was just fine. We had a ct scan, and ekg, blood work, and got to see 3 different doctors. Victoria decided that she did not like a pric on the foot, nor that cold gel on her chest for the ekg...um I wonder what she will think of doctors tomorrow?? Nevertheless, she is finally settled down for the night (now if only those nurses will leave her be ...just kidding :))Linda is spending the night with her, and I will head over there in the morning. Her surgery is for around 9 am tomorrow (26th) and will last for a few hours. Lord willing, she will pull through just fine, but we trust Jesus enough to know that if He wants to take her home and look after her, that is fine with us ..I write that last sentence with much sorrow, but not sorrow that has no hope. If   our Lord conqueored death, there is no longer any need to fear it. His mercy and grace for tomorrow will be fresh, full, and sufficient, this I am confident of.
Well, believe it or not, I am craving that Shuans ice cream that is in the freezer downstairs, so will sign off till tomorrow. Resting in the secret place of the most High. Bruce

Please Pray!

Victoria was checked out by the neurosurgeon this morning, and he agreed to put in the shunt in. The surgery is set for 8:00 tomorrow morning. Please pray that the Lord would guide the doctor's hands and cause the surgery to be a success. Needless to say, there are risks involved, but the Lord knows, and He is the great healer! Thank you for praying!