1.  Right now he is going back to 20 calorie Neocate, not diluted with Pedialyte.  While 20 cal is the standard amount for formula, it isn’t enough for Noah to gain weight.  It is better than the highly diluted formula he got this weekend, though, while not being too very high in protein.

2.  The GI office is ordering a new formula called Profree.  This is a protein free formula that has all of the vitamins, minerals, etc. that a regular formula would have.  We will end up mixing this with his Neocate to produce a balanced, lower protein formula.  

3.  The GI doctor is making a referral to Peds Surgery for Noah to get a GJ tube. This feeding tube would go in through the same tummy “button” that Noah has now, but it would deliver food into his small intestine instead of into his stomach.  This would reduce the likelihood of his vomiting.  There is another surgery called fundoplication that would make vomiting more difficult, but it involves a permanent change to Noah’s anatomy.  The GJ tube makes much, more sense.  The downside is that it is a technically difficult procedure, and a referral isn’t a guarantee that the surgeon will agree to do it.  There is another procedure called a J tube that involves a new incision, new button, etc.  We don’t prefer this because it is much more painful and invasive, but we will have to go with what the surgeon is comfortable doing.  Another issue is that the GJ tube placement requires equipment (for inside Noah – tubing, etc.)  which the doctor would actually have to order.  It so unusual, that these items aren’t even stocked in the Children’s Hospital.  Noah will be seeing the GI doctor on Wednesday morning and we should know at that time if Peds Surgery accepted the referral.

4.  We are going to be speaking with various members of Noah’s medical team to see if we should have some sort of port/central access put in while he is under anesthesia for his new tube.  I would LOVE to hear from anyone who has a child who has had one of these.  We know there are big pros (easy, fast access for IV’s and labs; much less pain and trauma for Noah) and big cons (risk of serious infection).  We need to decide if the benefits outweigh the risks for Noah.  This is a clear-cut decision for children with issues like cancer where the doctors know how often the children will need  labs and/or IV’s.  It is a harder call in a case like Noah’s because none of us really know how often we can expect to need access to his veins.  Obviously it is a matter for prayer and for seeking counsel (the good, the bad, and the ugly) from other parents who  have done this.

On a much lighter and very happy note, we got the green light to offer Noah a special “cake” for his birthday on August 10th.  In light of everything else, this is pretty insignificant, but it has REALLY bothered me to think of all of us sitting around eating Noah’s birthday cake while he plays with a rattle or something.  It just seems mean or something, and I don’t think I could choke down a single bite.  The dietician knew I was concerned about this, and she said that I could get a little plate or bowl and decorate it with buttercream frosting (which I would make homemade, of course).  That is just straight sugar and fat which shouldn’t make him sick at all if he ate some.  We can put a candle in there, and enjoy watching him smash it in his hair or do whatever he wants with it.  We don’t think he will do any more than taste a tiny dab, but at least he will have that traditional first birthday fun of playing in the frosting.  Now I just need to come up with a really cute plan of what to decorate and how to do it . . . .  (BTW, please don’t think that I am frivolous or heartless to be concerned about something silly like birthday cake.  It is just one of those things that has tugged at my Mommy heart.  I know it isn’t that important to him, but it means the world to me for this ONE thing to just be “normal” for Noah.)   I do have to say that the dietician hasn’t completely recovered from her tact deficit.  She said that she was very happy that we wanted Noah to have a happy birthday and that she hoped we took videos in case he didn’t have another birthday.  (!!!!)  That was the point where I said thank you and goodbye.  Is it just me, or was that a truly horrible thing to say?  We know he might not see adulthood, but we have NO reason to think he only has months to live.  No one has ever said anything like that to us and I refuse to believe that there was any fact or science behind that statement.  Of course this is something that is seldom far from our minds, and I would be deceiving myself if I said that it doesn’t influence the choices we make, but I didn’t need to hear  it from someone else.  Ugh!  Maybe she was trying to be helpful in case we were blissfully unaware that we have a seriously ill child  . . . .

Tomorrow Noah is seeing an allergist for a minor procedure.  The allergist will be injecting a small amount of histamine under Noah’s skin.  In a normal person this would cause a red raised whelp.  If Noah doesn’t react that way, it would be highly suggestive for Riley Day.  If he does react, he could still have Riley Day.  Thursday he will see the eye doctor and have a drop placed in his eyes.  You or I wouldn’t react to the drop, but if it makes his pupils dilate this would also be suggestive for Riley Day.  These are both quick and easy things we can do that may (or may not) suggest if he has Riley Day Syndrome instead of a mitochondrial defect.  If either test is suggestive of Riley Day they will probably only do the surgical nerve biopsy for Riley Day and not do the muscle biopsy to test for a mitochondrial defect.  It the tests are normal then Noah will probably have both biopsies done.  These can be done at the same time.

Tomorrow Noah is also having physical therapy and occupational therapy evaluations.  We were able to get in with the PT/OT team that can work together with Noah at the same time.  We are so thankful for this!  We have heard a lot of good things about these ladies.

OK, blog friends.  Kate has finished with her portion of the post and is off to make dinner.  Now it is my (Jeff) turn!  Kate thinks that I am posting our “Thankful Things” list for the day, but in reality I am writing all of you for HELP!!

Here is the situation – Kate and I will be celebrating out sixteenth anniversary this Friday, July 20!!  While I am thrilled at having Kate as a wife and best friend, I always have problems with days like Valentines Day, Mother’s Day, our anniversary and basically any other gift giving occasion.  I don’t forget about these special days, its just that I never seem to be able to come up with the right gift to express my love for her and I usually end up with something lame.  When it comes to buying gifts for Kate, I am about as romantically creative as a tape dispenser.

Do you think I am over exaggerating about my inability?  For proof of my complete failure as a husband in this area of life, I would like to present the following event which is absolutely true and in no way am I making this up as I go.  Kate, is my (unfortunate) witness.

Several years ago I was stumped (as usual) about what I should give Kate for Valentines Day.  For some reason, life got in the way and I ended up driving into our driveway, finally home from work and realizing that today was V-Day and I had not said anything to Kate about it, let alone bought her a gift!  In a moment of panic I went inside and started listing my options of what to do and considering which one was most feasible. (fake my own death and leave forever, blame it on aliens, blame it on the Democrats, blame it on alien democrats!)  Finally, I struck upon an idea so bold, so crazy, so daring, so astonishingly unromantic, that it just might work!!  So as we were in the bedroom that night getting ready to fall asleep, my looked at my wife (who, to her credit, hadn’t said anything about the lack of cards/flowers/gifts and probably thought I didn’t love her anymore) and told her that I got her a gift.  I have never seen a person’s head whip around so fast as Kate’s did when I mentioned the word “gift”.  Any other mortal would have snapped their neck doing that, but Kate’s adrenaline must have kicked in or something.  You should have seen how large her eyes got! (kinda freaky, actually)

I then presented her with (drum roll, please...) “The Potato of Love”.  You read that correctly - I gave her a potato.  But not just any potato!  This was a large baking potato that I carved a heart into on one side exposing the bright white meat against a dirty brown background.  I then gave her some line about how our love was like this potato in that it must fight the pressures that the world puts on it in order to grow…blah, blah, blah… even after this potato is gone, I will still love you… blah, blah, blah.

Believe it or not, She Bought It!!  I kid you not, she laughed about it and said it was sweet and had a great time telling all her friends what her romantically-challenged husband did on Valentines Day in a desperate attempt to avoid sleeping on the couch.  I had guys at church coming over to me, putting their hand on my shoulder, and saying, “You gave her a potato?!” and then just start laughing at me in a way that said, "Way to go, you slob!"  Yup, my social life was tanking for the entire month of March.

So, my blog friends, in order to avoid another complete social catastrophe, I would like to hear your advice on what to get Kate for the special event this Friday.  What is the best gift that the ladies out there have ever received?  On the flip side, what is the worst gift you ever got?  That way I can avoid the same mistakes other husbands have made.  Please, for Kate’s sake, help me out with this.  Right now the best idea I can come up with is…

“The Turnip of Passion”!!!  Whadaya think??   or

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Posted by Anonymous

You wrote some wonderful things and it is great to read good news. I wanted to say that maybe the dietician did not mean anything bad by it. She may be in a position where she deals with patients that die quite often. Unfortunately this makes people hard inside and they are not as sensitive to others feelings. Perhaps she thought she was being helpful. Perhaps her attitude towards of late has to do with a personal problem she has and needs your prayers. Perhaps she is just mean and still needs your prayers. I'm sorry you have had some bad encounters with her. I hope it gets better. God bless and many prayers from us to you and yours. Patty and family

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Posted by psalm113v9

Oh my! You all have quite a bit on your plate, but I'm glad you're relying on God's grace to get you through. I'm still laughing about the Potato! Sounds just like my DH! lol

Kate, here's a suggestion for Noah's decorated plate. How about getting a cute cookie cutter (maybe Pooh Bear) and trace around it with icing. Then you could fill it in with icing, make some eyes and smile, etc. The reason I thought of this, was that my son had major food allergies when he was tiny. For his 1st birthday I made a special cake for him and our guests. I wanted him to have his own little cake for tearing in to. I used a Pooh Bear cookie cutter to cut out a piece for him, then decorated it (with special icing, too) and it was so cute.

And I'm praying that Noah will enjoy ALL of the birthdays that God blesses him with. That crazy dietician lady should learn to keep her mouth shut...my opinion. I'd love to inform her that none of us know if we're getting another birthday or not, and we need to live life to it's fullest each and every day. Our days are numbered by God, our Creator, and Giver of Life.

Blessings to all of you. Your posts bless my heart, and give me an opportunity to intercede for the specific needs of your precious family.

In Christ,
Karla in El Paso, TX

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Posted by Anonymous

Jeff, you really are romantically challenged! What can you do for her? Well, I personally don't want jewelry (I also don't usually want something unromantic like a household appliance). What I REALLY want is a real date - dh arranges all the details (including the babysitter), and takes me out for a nice dinner (at a restaurant we wouldn't take the kids to!) and maybe a play (or a movie, but a play of some sort is more fun and involves more sharing). A night at a bed and breakfast (or even a nice motel) would be even better, with dinner out and a nice "chick" movie (on DVD) we never have time to watch with the kids.

In your situation with Noah's constant needs, I'd imagine Kate would rather have uninterrupted time with you than anything else in the world.

Just my 2 cents' worth,

Deanna

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Posted by Anonymous

Dear Jeff,

KATE DON'T READ THIS FOR A WEEK!!!

I thought my husband was bad!!!! You two would be fast friends, but maybe not good influences on each other!!!

Have you ever read Lisa and Art TurKeurst's books? "Capture her Heart and Capture His heart." They are definitely helpul books and buying both would be a good gift. Art and Lisa are from Charlotte and he is Chick-Fil-A man and Lisa is a Proverbs 31 writer/conference speaker.

They gave my romantically challenged husband the idea to list in his handwriting the top 30 things he loved about me. Some were so funny and some were so sweet and romantic. He had it matted and framed in a beautiful frame. I love for my girls to see it and I can read it over and over again in times that he is practicing his lack of romance! I can't imagine him topping it!!

Hope this helps!

Julianne in Charlotte

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Posted by biblesquad

Have you thought about a basket filled with all the things she loves, such as a starbucks coffee card. Take her out to a favorite restuarant that you don't get to go to very often. On the less expensive side offer to watch the children and let her take a bubble bath uninterupted!

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Posted by lahbluebonnet

The first birthday for my ds was in a hospital! We celebrated a week before we were admitted for a swallow study, etc, etc, etc (I'm sure you can relate). He was being seen for feeding issues because...he was the pickiest eater in the world, truely a lightweight, but one very happy baby! I too was devastated that he couldn' t have birthday cake and ice cream. Docs had forbidden it and he wouldn't know what to do with it. As much as it bothered me then, I had forgotten all about it until I read this. I'm glad you have the doc's blessing to go for the cake! =) Keeping y'all in prayer...that's all you can read Kate!

Jeff, you and my dh are kindred spirits! Do not give Kate what dh gave me for Christmas one year. My sole gift was a small vacuum cleaner with all of the attachments. Sigh. The most romantic, thoughtful thing dh ever did was when our oldest was a baby and we had no baby sitter. He told me not to cook. Just to put the baby to bed and get comfy. He came home with a wonderful meal that we ate in candlelight and quiet music. That was wonderful and special because he took no input from me, but acted upon what I liked.. =) (Of course that worked because our oldest had no health issues...after ds came into our lives a night alone was rare due to health issues!) Nowadays dh either asks me or takes the kids shopping with him for tips! lol
Blessings,
Laurie

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Posted by Anonymous

Although my husband and I are not big gift givers, probably because we don't really NEED anything. One thing that perhaps both could really enjoy and I personally find soothing is a CD by Soundforth music. The voices blend so wonderfully with perfect hymns. Perfect for anytime!

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Posted by denise@thefranklinflock.com

First I would like to say that your family's dedication to the Lord and one another in the midst of such trying and painful times is trying an encouragement to me in my life. I pray for you as often as I think of you... and you are on my heart often because I, too, have a Noah.

As for Jeff's request... my hubby has gotten me such things as a network card for my laptop so that we could IM each other from across the room, a data-vac so I could keep my laptop clean, he never got me a birthing gift for our first two children saying the babies were enough (after our twins he saw the light... or was it stars?). I am personally a huge fan of just getting to have together-time (as we have 4 under age 5 and will soon have 5 under age 6)... I am sure with your current situation Kate would welcome the time to be alone with you. My only thought would be for possibly a simple necklace that would be a reminder of the Lord's strength so in those trying times, she could reach up and be assurred of His love, and yours.

God bless,
Denise in TX

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Posted by HopeRumpca

Jeff, I know Kate probably doesn't want to leave Noah with a sitter to go out to dinner... what about bringing dinner (and dessert) to Kate? What about a terrific meal that she doesn't have to cook and then once the children have gone to bed a special dessert just for the two of you. Something she really loves but doesn't get too often.
We did not have sitters available to us and one time my DH brought home a special meal for our daughter and a separate meal, dessert and movie just for us to enjoy after our daughter went to bed - it was romantically WONDERFUL!
You can always fall back on gift cards to every coffee place in town! LOL!

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Posted by DonnaC

Spitting nails after reading the response from the dietician. I'd say something to the doctor, if not for your own sake, for those she continues to deal with. She needs to learn some tact and grace. (Sounds a lot like our Neonatoligist at Richard's birth - next morning when I was still groggy from the emergency C-section told me, "Well, we had a dead baby there for a while." ARGH Thank you so much...)

Richard had the tighten the top muscle of the stomach, loosen the bottom stomach muscle, and had the button put in (feed into the tummy direct), all when he was 6 months old. He had reflux so bad, they said they had to tighten that muscle. He was only emptying 16% of his stomach after an hour (should have been 90%), so they had to loosen that muscle. I was glad that they were able to do all three surgeries with only one anesthesia. Anyway, all that you are going thru brings back so many memories...

It is NOT friviolous being concerned about a b'day cake/celebration! {{{Kate}}} Normality is something that a mom of a special needs child longs for. Grab all normality that you can! It is important and take a LOT of photos!!

Now, Jeff, you need to make sure she doesn't read the rest of today's blog entry OR any of the comments... for the next FIVE days, maybe make that SIX days! LOL

I'm into 7-11's Slurpees currently. A Coke Slurpee, or 3/4 Coke & 1/4 Cherry Slurpee, when I least expect it would make me happy! So a surprise of her favorite junk food, or maybe a month's worth of such treat... that would be nice.

A necklace would be nice also..or a piece of some jewelry (I'm a glutton for pearls, personally).

I think the best suggestions, though, have been bringing home a special meal just for the two of you. Maybe have her call for pizza for the kids and get them to bed early, and then you bring home a special meal for 2 from one of your favorite restaurants. (Don't forget dessert, although, if Kate's like me, she won't have room for dessert and will have to eat that the next day.)

See, something she doesn't have to coordinate or make a decision on is a perfect type gift. Something that shows you put some effort and thinking into it will be exactly what she'll want... See, that's why you got away with the Potato--you had to have a story line to go with the Potato. So you put some thought and shared your love for her...

Wishing you gobs of imagination and a successful and happy anniversary event!

In Him,
Donna C
http://donnac.com

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Posted by Anonymous

NO KATE ALLOWED UNTIL AFTER FRIDAY!! ;O)

After reading your portion of the blog to my DH (he can relate to you really well!), he gave a couple of his own ideas and I'm expanding on them!

Go to www.pajamagram.com and order your wife a wonderfully comfy set of pjs (they're not what you might think) and they even come with a lavender sachet (her favorite). Then go to www.vermontteddybear.com and get her a homemade teddy bear. Have these delivered on Friday. Then come home Friday with dinner and a really good "chickflick". Have your parents watching the kids....in your own home so you can both be comfortable not leaving Noah (they can leave once the children are all asleep)....and you two spend the evening in bed with Kate in her comfy pjs snuggled up with her two "teddybears", feeding each other and watching the movie together.

I know this may seem expensive, but the two of you deserve to splurge on each other! You give so much to your family all of the time, that this should be just for you two without guilt. In this day and age, it's difficult enough to keep a marriage going with all of the typical pressures that get in the way (my DH and I just celebrated our 16th on the 8th so we know) but you two have been given added burdens that could act as a further divider and you haven't allowed that to happen. KUDOS to you! Splurge for the day and revel in the love you have for each other!

Whatever you decide to get her though.....JUST REMEMBER, NO APPLIANCES OF ANY KIND!!!

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Posted by Anonymous

Jeff,
Is there some way you could take a nice long piece of wood or get a long picture frame and have all of the kids do their handprints on it from biggest to smallest? I'm a dope for when my hubby does something that helps me capture moments with my kids! You could throw in a little poem about "let me count the ways I love you..." or something like that. I hope you guys have a good time no matter what you end up doing!!
Sara in WI

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Posted by Anonymous

Jeff,
I've seen several great suggestions. Here's mine....

Arrange with some friends to set up a romantic dinner maybe in the basement or dining room at their house. Candles, food, dessert, flowers, the whole nine yards. Arrange a babysitter for the bigger kids at home, and take little Noah with you. Ask your friends to watch Noah for you while you eat at their house, that way you and Kate will still be close by. If by chance Noah is in the hospital, do this in his hospital room. You wouldn't believe how much nurses love getting in on stuff like this. They will bend over backwards to help you pull this off! If you need help getting a meal delivered post us a note on the blog, and we'll get it there for you! Also, many hospitals have movies that you can check out and watch. This way, you can have dinner and a movie!!! I'm sure Kate will love anything you do, but I think I'd avoid the turnip as much as possible! =)

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Posted by Roni in So.Cal.

You need to make sure you're not hungry or working in the vegetable garden before you attempt any more gifts, Jeff. LOL. Seriously, my husband is also gift challenged, but the very best gift he can give me is his time. He works very long hours and has little energy or time for much of anything. His undivided attention over a nice dinner sans kids is the best! He treats me like I'm a date, not a wife; orders for me in the restaurant, hangs on my every word, etc. He's done gifts of jewelry or a trip to the spa, but I must say my favorite gift is just spending time with him.

Hope you have a blessed anniversary!
Roni in So. Cal.

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Posted by Anonymous

Kate,
Perhaps the dietician was trying to be helpful - maybe she didn't capture the last birthday or whatever before a family member died. One can hope it was clumsy helpfulness and not meanness.

Jeff,
The worst gift I ever got was Mother's Day. My dh forgot to get me a gift, but tried to cover it up by saying he was going to take me to pick it out. So we got to the store (and I NEVER buy these things for myself). I spent, probably an hour looking at all different earrings, bracelets, necklaces... not fancy jewelry, nicer 'costume' jewelry. Finally I pick one that I like, that will go with most of my clothes, that is a good color. Husband takes one look at it, and says "I'm not buying you something that cheap and tacky". WTG. I only spent an hour picking it out MYSELF. Grr.
Also, a hair dryer. I DO NOT blow dry my hair. Husband got me a hair dryer because I didn't have one. I don't have one because... I don't ever blow dry my hair! LOL

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Posted by Anonymous

Jeff, I agree with what lots of folks have said in many ways. The best gift I got from my husband was he took all four kids to the portrait place and got portraits of all the kids and one together, and had them framed for me. He got them all ready and got it all done without me having a clue!!!! It was awesome! I am always done in by that kind of thing.

Another thing: I love (LOVE) chinese food, and no one else in the family is as crazy about it as I am. Well, if he brought home chinese for me, settled me in our room with a good book (or TV or a chick flick), while he got the kids all fed and into bed, and then came to join me. Little things to make me feel pampered. Let me have an uninterrupted bath, put some simple smelly candles in the bathroom, bubble bath, and take over the house and kids. It never is items that our bought that really have an impact with me, but just simple things that tell me that he values what I do, and he is aware of all my little favorite likes. That kind of gift is priceless.
Another idea, one year he went to the jeweler and they put three rings (we only had three children at that time), just simple gold and white gold bands, together and inside each one was my child's name and their birthdate. It is still one of my absolute favorites! Though it really isn't big enough now, but it was so cool for where we were then, and it wasn't costly.
Just let her know how much you love her! We never seem to get away from the kids anymore (who wants to babysit five children??), so we have dates after we get them to bed!
Good luck!
Christy in WI

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Posted by Anonymous

Of course Noah needs some kind of cake to play with! You want the pictures with cake in his hair!

I can't imagine the amount of grace it took for you to just hang up on the dietician instead of giving her a piece of your mind. What she said was absolutely thoughtless. She needs to develop some tact.

As for the port-a-cath - my son had one for about eighteen months. Those months were very rocky - major bouts with metabolic acidosis every month or so - and then weekly.

The Up-side: He needed bicarb at least once a month to bring him out of acidosis, so the port was literally a lifesaver. He'd crash so fast (from normal and playing to semiconscious and critically ill in under an hour) that any second spent hunting an IV site would be detrimental. Also, because we were trained to access it and commanded to carry the appropriate supplies in his backpack at all times, we were once able to get a line in him while we were waiting for an ambulance - that allowed them to do their job because only RNs in critical care areas are trained to access ports. LMPs and EMTs have to put a line in a peripheral vein - and for Danny that would have been nearly impossible.

The down side: In those 18 months, he had one serious infection that involved removing the port, maintaining a PIC line for three weeks while giving a course of hefty anitbiotics, and then replacing the port into the other shoulder (two minor surgeries). This was how we learned to watch the person who was doing the access like a very polite hawk and make sure that they didn't compromise their sterile field. He also had one minor infection that was caught early enough that filling the port with the strongest antibiotic available prevented it from being removed and replaced again.

Over all, however, it was a good choice for Danny. You and Jeff will have to pray and discern if it will be a good choice for Noah.

I'm glad that there are some easy things that they can do that might shed light on which biopsy he actually needs.

About the vomiting - I don't know if they have mentioned that there are also neurological causes for vomiting. It might not be completely a GI problem. If he has mito, the chance of neurological cause is pretty goodSome seizure disorders and other disorders - particularly cyclic vomiting syndrome - cause vomiting, and even a fundoplication can't stop it for long. If he isn't in danger of aspirating, please do a lot of research and praying before you consent for that procedure. It isn't as easy of a fix as some doctors would lead you to believe.

Still praying for quick healing and correct answers.

Christa
thoughtfulmom.blogspot.com

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Posted by Anonymous

Hi,

My name is Jannie and have been married for 7 and a half years to the most wonderful husband named Pat. On my first birthday with him he got me the most lovely diamond necklace. It was really spacial because he found it at Zales marked down to 100.00. Now this necklace was has 26 diamonds making it 1 full caret. It was not supposed to be 100.00 but 1000.00 and the manager of the store said oh well we marked it wrong you get it for 100.00. Now the whole point of this to let you know that it is not the necklace that is so special to me, but that is from my husband. In the following 7 years he has managed to get me nothing for every occasion since. But It does not bother me really. I know how much he loves me. He just never gets around to getting anything until its too late. I am sure whatever you do for wife will be great too her.

Jannie

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Posted by Anonymous

Well sir, the potato tops my worst gift list :) It seems to me that the two of you could use a nice night out. With all that you are going through with Noah, I think a break would be a wonderful gift. Surprise her with the evening completely planned (you know a sitter lined up, the resturant picked out...) call her sometime that afternoon and tell her to be ready at (whatever time works) and treat her as if you were still dating.

You asked, the best gift? For our 15th anniversary, I had a friend take our children overnight and I made a wonderful dinner here at home and my dear husband gave me a list of the 100 top things he loves about me. Can you imagine how long he worked on that list to come up with 100 things and NO repeats??

Have a very Happy Anniversary!

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Posted by MamaDole

My boys (16 &15), suggest:
* A snow shovel...wrapped in a fur coat (to keep her warm while *she* shovels the snow).
* A Dewalt drill with "I love you" engraved on it.
* A John Deere riding lawnmower with an MP3 player that plays "John Deere Green" and "She Thinks My Tractor's Sexy" over and over.
*A Duke's of Hazzard lunchbox. OR Paint your car to look like the General Lee.
I don't know where they get these ideas, all I can tell you is that they are rednecks. ;-)

MY most romantic gift, my beloved gave to me 3 years ago on Valentine's Day. It's a 12 gauge pump action shotgun with pistol grip. Nobody messes with Mama! :-) Show her that you love her and always want to protect her ~ go for a weapon! (Now they are complaining that I called *them* rednecks and then suggested you buy her a weapon ~ I didn't say they don't come by it naturally!) - The boys also wanted me to say that if you do buy her a gun, make sure it's not a cheap gun, but a good gun.

*How* wooded is your property? You could send the children (with the exception of Noah), off to Gma's house or someplace and have a romantic afternoon out back. ;-)

What you *SHOULD NOT* get her is a chunk of coal in a jewelry box and then tell her that if she waits long enough, it will be a diamond! Don't ask how I know that would be a bad idea.

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Posted by Anonymous

To this day my very favorite thing my husband ever did for me was when the kids were little he snuck off to the big bathroom - the one with the tub - and he loaded it up with candles and a tub full of hot soapy water. It wasn't any special occassion but we had 2 small children who were very close in age. I still remember the feeling I had when I opened that door and realized he had taken the time to do this and that while I was in there soaking he was out there doing all the stuff I normally did.
My love language is not gifts so I have never cared too much about material things. I am like alot of folks here I would LOVE to start out the evening with a lovely bubble bath and then a nice dinner and movie snuggeling in our own bed. Gosh I loved the idea of Gma and Gpa babysitting right there at your own home if you don't want to leave Noah.
The one thing I would say is that if gifts are important to her - if that makes her feel loved by you - then by all means get her a nice necklace or something. But if her love language is words of affirmation then make a list of reasons you love her. If it is time spent together then do that. You know her well enough by now to know what makes her feel special just speak something in her love language. And if you have no clue what I am talking about you might want to pick up a copy of the book "The Language of Love" by Gary Smalley and John Trent.

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Posted by Anonymous

Hi Jeff,
I just read this idea from a couple in our church going through some very hard times. The husband gave his wife a charm bracelet with a charm for each year they had been married and a letter to go with each charm to tell its significance. I thought it was sweet. Does Kate like jewelry??

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Posted by Anonymous

Kate, you are not being a frivolous person for wanting Noah to have a great first birthday. We don't know God's plans. What if He healed Noah and at age 16 Noah looked at pictures and said Mom, where's my 1st birthday cake pictures. Take heart, I would absolutely want to do the same. These are the memories that get us through no matter what happens.

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Posted by Anonymous

There is no such thing as false hope. Noah has what each of us have - today. Believe in God's power.

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Posted by augustamom

Have you ever checked out the doctors and treatments available at the Children Medical Hospital here in Augusta Ga? I have a few friends who have had their children helped there. You can check out their
website www.mcghealth.org
I believe that's the site.
You and yours are in our prayers.
As far as a gift...I love when I get a gift cert. for a massage or a pedicare to a nice spa...have any of those around you? or...Just an evening out to dinner alone with my husband to chat about whatever we can think of. God bless you and yours.

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Posted by LadyM

I am so sorry that your dietitian seems to have a great lack of sensitivity. How horrid - the things people say (that they think are okay to say to others). Sigh. Been there done that with doctors and people in years past.

Hugs to you and we will keep you in our prayers. As far as a suggestion for Jeff - I have no idea what it would take to outdo the "Potato of Love"..... :)

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Posted by Michelle Irving

Hi Jeff!
One year, my husband filled a "prescription for love". He took an empty prescription bottle, and modified the label, stating on there that I could take as many as needed, as often as needed for life. He then filled the bottle with slips of paper that had things on them that he would do for me - everything from a romantic evening out, to household chores to just a plain old hug that would last as long as I wanted. It was great! He did that several years ago, and I still have it and he still honors my "prescriptions" when presented! Good luck and congratulations!
Michelle Irving

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Posted by Anonymous

Jeff, I hope you don't allow your dear wife to read the posts this week. I agree with the post that suggested a picture of all the kids, as a representation of the love you have had for the last 16 years, and 17 beautiful roses, (I hope you can figure that out Mr. Romantic! :-) )

Noah; Has he had an MRI for a brain tumor?

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Posted by Anonymous

I am continuing to read your blog posts and pray for you all
daily. I have shared a little about my son Kenyon with you.
I don't want to take up alot of room on your blog so I will get right to the point, lol.
I noticed that you wanted to talk to someone that had a PIC line placed. Kenyon has one and if there is any questions that I can answer for you please feel free to email me at landpwiens@shaw.ca .
Also, I had a PIC line placed during my entire pregnancy 2 years ago because I could not keep anything down. I spent my entire pregnancy in the hospital and so I may be able to answer questions from not only a parent's perspective but also from a personal perspective.
Kenyon has also had a fundoplication done...so if there are any questions you have in that regard please feel free to ask away.
You will continue to be in our thoughts and prayers.

Patty

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Posted by Patty

Boy, we do have a lot in common. I have shared some with you about the similarities in the condition that both of our son's share. I would swear that you are writing Kenyon's story when you share Noah's story. I know all about the tugging in your heart with regards to Noah's birthday cake. Kenyon cannot take anything by mouth because of his low muscle tone causing frequent aspirations so we have also had to get creative. Honestly, it is us as parents that suffer more than the kids with regards to not being able to eat. Kenyon does not even flinch anymore about not eating...he realizes that eating causes pain for him...but I am always going on about how unfair it is that we can eat and that he can't enjoy the same thing. But that is not what I was intending to write about, lol.
Besides the similarity in our sons, we also were married the exact same day as you guys, lol. This Friday is our 16th anniversary as well. I had to laugh at Jeff's comments in his part of the blog...my husband suffers from the same thing, lol. I am sure that whatever we do it will be a family affair with our 6 children.
Happy anniversary to you guys...we will continue to pray!!

Patty

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Posted by Aubrey

I stumbled onto your blog from somewhere out there in blog land, and was encouraged by your continued faith in the midst of these circumstances. I also noticed you were from Greenwood, SC. We just moved to Greenwood where I started my residency in family practice at Self Regional. I'll be praying for you and Noah during these tough times.

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Posted by Anonymous

Our family is praying for Noah daily and hope you all have a wonderful birthday celebration. Could you use a small bowl (upside down) and covered with frosting, then placed on a bigger plate. We took pictures of each child on their first birthday, receiving their cake, same highchair, same setting, then framed them when the kids were older. So cute. Now for Jeff...I would suggest cutting out pictures of each child (maybe a heart shape of the face) and framing them together. You could do it yourself or have it done. Put a picture of the two of you on your wedding day in the center. I have never received this gift...but would like to!
In His love, Mary in FL

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Posted by Anonymous

Hello again :)

All we can do is keep praying for Noah. While we all keep interceding for him before heaven, this is yet hope that he will be healed. Please, Lord, grant this little one relief soon? And a really good birthday! Kate, imho bdays are about being appreciated and made much of on your special day, which you are trying to do all the time - just to make up for what else he is facing.

I understand the feelings you express. Its really hard when a loved one isn't up to what you'd like to do for them, but God grant you His peace as you plan Noah's big day. I don't think you need to fret about the cake issue one way or the other. He'd probably be just as happy with play doh shaped like a cake. its the hurrays! and bright shiny things - and extra huggles that will make the memory for him. Yes, please do tape and take as many pictures as you can - so you have something to show Noah over the years. If God is gracious, it may cheer him to see the way he has gotten better over time. Hang on to hope!

Hey, Jeff. NO TURNIPS :P

I think the biggest thing everyone is trying to figure out is - what does your beloved like & what budget do you have for this?

My husband loves my interest in adventure games- as long as one of the series I like has a new chapter he can pick up, he can face special occasions with confidence *grin*

Other than that meals out or brought home are both good. Even better (esp on a shoestring because you can bend the practical purchases toward this goal) is making up a day with everything she loves at home - an all -your -favorite- things kinda day? Bubble baths - Fav music on the stereo - Fav candy bars in her desk - Fav blanket on the bed - Fav movie planned to watch - & any other favs that come to mind.

Do you do any crafts? Maybe you could make her a leather book cover with her name on it or a purse? You could paint a picture for her maybe? Maybe do a wood sculpture?

If all else fails - try carving the turnip of passion out of a bar of soap. At least it will smell better than the real thing - and she can take a hot bath with it later. ;-)

Susan in Va
http://shushan37.blogspot.com/

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Posted by Anonymous

Hey Jeff!

Please know there is at least one person out here who supports (?) the potato gift! Sort of anyway. I have to say that my most cherished 'gift' from my beloved hubby was a diamond ring. Well, that's what he tried to convince me it was. Actually it was a dime-IN-ring. It embarrassed him to no end when I would wear it, but I LOVED it! Still do. It reminds me of his sense of humor! It means more to me than all of the pretty things he gave to me, except for my wedding ring!

I agree, however, with those who have suggested keeping Kate in mind - what she likes, what means the most to her or speaks to her, etc. But always remember that gifts and things are just a symbol. When it gets right down to it, all that matters are the people involved and the hearts that are tied together.

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Posted by Anonymous

I think in the romantic department I have a GREAT dh for the really big things, SO while I know that with Noah's health it isn't an option to go somewhere and leave kids, you could still schedule some time for the 2 of you at a day spa, get a couple's massage, and if she likes visiting the beauty parlor schedule her an appointment to get hair and/or a manicure/pedicure, and then take her to dinner at a 'grown-up' place that the 2 of you like but can't visit with kids. (I only have 3 +one coming, but I do know that no matter how well behaved they are, that there are places, like in our town it's the Vintage Press, that one does not take them for a variety of reasons).

Dh scheduled the couple's massage for us while we were in Mexico for our 13th (I can't believe it has been that long) anniversary, very relaxing.

If you have to, to possibly avoid hassles like canceled plans while you run to Greenville to the ER, You might be able to get gift certificates for those things, and arrange to do them on different days if necessary, and only make the reservations once you are relatively assured they can be kept.

And Jeff, NO TURNIPS!!!!! Maybe a tomato, and certainly a boquet of her favorite flowers would be good. Chocolate is almost always a winner too. Combine that with Starbuck's somewhere on your outing, and there you go.

Have fun planning!

Diane in CA (SHS)

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Posted by Anonymous

Hi Kate,

I really couldn't remember the name of the surgery that my very good friend's child had for reflux (100+ times per day even on a good day when he only fully vomited 5-6 times). But here you posted it in your blog--fundoplication. But it involved wrapping his stomach around his esophagus to essentially tighten the sphincter muscle and keep what was down, down.

Since that is one of the options listed for Noah, I just wanted to tell you that for my friends child it worked wonders, and their little guy who wasn't gaining weight (read was losing weight, and you could visually count his ribs) and was on special formula etc. did not nurse well etc.

He stopped vomiting and reflux entirely after the surgery, and very shortly began gaining weight, and is now 18 or so months past the surgery and is running around and gaining weight, and functioning like a normal 2 yo child.

I know that he did not have all the other things going on in addition to the reflux etc. that Noah has, but I wanted to give you some info on someone for whom that particular surgical approach had worked very well for exactly what it was supposed to do with no real complications. they were so very thrilled to have their little guy able to enjoy life and not throw up masses of stuff every time he ate.

Diane in CA (SHS)

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Posted by Jo

Dear Kate,

I didn't wade through all the comments so I don't know if anyone has talked about Noah getting a port. None of my children have had a port, but I had one myself for a year and a half to receive chemotherapy. Has he had many blood draws or IV's? I assume that he has since he has visited the ER quite a bit. It would be beneficial for saving his veins from scarring which makes it more difficult for IV's/blood draws (I have that problem and sometimes have to be poked more than once to get it to work). My port was under the skin which protected it from germs and the only things required is for it to be flushed once a month which they will do after each use anyway. I was very happy with it and didn't have to do anything special for it at home. I totally understand the concern about infection. I knew someone that happened to, and they had to remove it right away. What does your doctor think? If you have any questions, please e-mail me.

your friend,

Jo
newlcomm@yahoo.com

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Posted by Laurie Latour

Hi Kate,
I have nursed my husband through the past 8 months with a Perm-Cath in his chest (using it daily for dialysis, plus blood draws & IV's from time to time). I know an infant is another story, but we have gone through countless PICC lines, subclavian catheters, jugular catheters and various other types of accesses. There is always a risk of infection to -just about anything, including all the sticks they must do when they need blood. Ted has never gotten an infection in 13+ yrs with various catheters off and on during that time. You have to keep the insertion site covered (we use gauze & tape) and it must be dry. Depending on type, you may need to flush it with sterile saline, change the dressing, and a few other things, but nothing you can't handle.

On the flip side, if you continue with the sticks each time they need to draw blood or start an IV, those can scar and damage the blood vessels, so that is not without a certain risk, to say nothing of the pain for Noah - and you.

I think it is safe to say that Noah will need more blood drawn, more IV's. If it were me, I'd go for some type of PICC line or whatever the dr. thinks is the best bet for an infant. Ask about a tunnelled type of catheter. I think most now are tunnelled under the skin for a ways before they enter the blood vessel. Risk of infection is less with a tunnelled catheter.

On another note, what the dietician said to you was most unprofessional. It brought us to tears. I'll bet she's had all kinds of multi-cultural sensitivity training! How about a little compassion training!! I would certainly tell the dr. who referred her to you. We have found that docs rarely know about things like this and they need to know.

We are praying for all of you and love your updates!
Blessings to you,
Laurie Latour

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Posted by Anonymous

No Turnip! lol!

I'm sorry your dietician is so tactless - that is terrible!

My husband is usually pretty good at remembering and coming up with nice gifts - homemade pottery is probably the best one, but he is a potter. I think a handmade card would be a great gift - takes thought and has a special touch...

Carol www.homeschoolblogger.com/threelittleladies

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Posted by amtell

How about carving two apples to look like faces and letting them dry. Give them to her with a card that says "Looking forward to growing old with you." Or take her to a car dealership and browse the van section. While you're on the lot, tell her "Honey, I may look at other vans, but you are the only woman that will ever turn my head." Then give her something with diamonds and take her out to dinner. ;O)

The most romantic thing my husband ever did was to take off work and bring me lunch one time when we were moving. (He knew I wouldn't stop long enough to make anything decent.) Ofcourse, when I told someone else about it later he said, "THAT was ROMANTIC????" I think romance is being suprised in a way that says "I was thinking about you." So, it really doesn't matter what anyone else tells you to do, because it will only be truly romantic if it comes from your heart. That's why you got away with the potato.

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Posted by Anonymous

One of the most thoughtful gifts my hubby ever gave me was a stack of brand new dollar bills, crisp from the bank, glued together on the edges with rubber cement. This made a pad of money, similar to checks in a checkbook. In fact, he put them in a checkbook cover, and hid it in my purse with a note to use these bills ONLY for special treats for MYSELF! He knew that was the only way I would have ever spent anything on myself for something like a milkshake, or a new hair thingie that I liked. I loved it! And I thought about him every time I peeled off one of those bills.

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Posted by NCLighthouseKeeper

There are tears streaming down my cheeks and my sides hurt from laughing so hard ~ I'm sorry, but a POTATO?
My husband keeps telling me that all guys ( or at least most) are like him, and I have refused to believe it. But the evidence is mounting....
At my daughter's graduation ceremony, in front of several hundred people mind you, dh opened up a grocery sack and presented our daughter with a ... .BRICK. Neither she nor I had a clue... but then he told her that he had taken it out of our walkway that morning, and that it was for her to take to college to #1) remember her home and her family, who would always love her and be there for her #2) to remember that Jesus was her Rock
and #3) to provide an opportunity to share that with others when they asked why she had a BRICK on her dresser. Several people offered a #4 later on - to beat off the guys with! Sometimes this practical, pragmatic, left-brained, not terribly romantic or emotional man just floors me..... so we can assume you have it in you too!
We'll be celebrating 25 years of marriage in August ~ I think I'm going to print off the responses you've gotten and start leaving them in strategic locations for him to see...
The most romantic gift ever was when he totally surprised me for our 20th and arranged for us to go to Charleston for the weekend, and even flew my mom down here to stay with the kids ~ all without me knowing about it until 2 days before....
He has NEVER done anything like that before or since
I agree with those who have urged you to identify Kate's "love language". I would adore anything that took THOUGHT and showed caring. I love the idea of a framed list of things you love about her, or jar of slips of paper with things she can redeem later - backrub, day off from housework ( i.e. someone else to do it! ), pedicure, lunch together, etc....
Better than a one-time dinner ( which if it was here, I would have to clean up afterwards....)

Beth

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Posted by Jenni

Hi Jeff, I think anything that involves you finding a baby sitter and not having to plan out anything herself would be a blessing. Sometimes we just need a good night alone with our husbands. Sounds like she just needs a mellow evening to read together or go sit and have coffee/tea together. Dinner at a place that is quiet and maybe have the kids stay the night with Grandma? Bless you both! And I hope that it turns out well! Just asking means a lot to a woman!

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Posted by Anonymous

Hope you have a renewing...and passionat?!:)- anniversary. Keep your marriage strong. It's hard when men and women handle these things differently, it's easy to misinterpret things....many marriages don't make it through having a special needs child. I know yours will, but God's grace.
Have a wonderful, refreshing, special time celebrating your relationship.
Monique

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Posted by Anonymous

Ok I read about half the comments ;) I am trying to picture Jeff doing anything romantic in the backyard. They have a good size backyard with lots of trees. But unfortunately it is seperated from the neighbors on both sides by a chain link fence. Very open to viewing :)

The best gift Lance bought me? My kitchenaid. What did we do last month for our 17th anniversary. Splurged and took us all out for ice cream at bruesters. Yum!

love you guys. Hope to see you VERY soon.

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Posted by Anonymous

Kate,
As the mother of son who passed away at 5 days old I feel I can say that, yes, that the comment by the dietician was an insensitive and unnecessary comment. I too had my share of those, some from my closest family members. My opinion as to why they make them: they don't know what else to say, get nervous, and say something that everyone has probably thought at one time but that doesn't need to be said out loud. I am REALLY, REALLY pulling for Noah. I also admire you and your husband; your strength and your ability to find humor amid the devastation. Sending good thoughts and many hugs. . .

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Posted by Momofmusicmasterplus4

I guess with so many new people working with Noah and your family, you were bound to have someone without much tact! I was thinking you needed to have the pictures of him with his first "cake" because he'll look back at his pictures someday and wonder why he didn't have a first birthday!

Blessings,
Danielle

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