What do you think?

Let me know, but please reply on HT ladies.

Thanks for helping me out.

Some recent pics

Another biopsy, but this time with the Hirschsprungs Specialist in the US

Poor Holly bug. I just HATE to put her through anything. But, it seems that there is no choice. I have been emailing the specialist in Cincinnati about her ongoing issues. He wants to see her and rebiopsy the distal pull-through as well as do a contrast study.

It is good that he is getting onboard. But it is hard to hear that he thinks there is cause for concern. We don't have a date yet, but his nurse will be in contact to set that up.

Can I vent a little bit? People are always telling me how healthy she looks, and I know they mean well with it. I know it is intended to encourage me that she is a beautiful child and we must be giving her great care. But, in all honesty it is hard to hear when you know things aren't right, and you think you must be freakin' crazy to think something is wrong when she looks so good. Well, on the outside at least. I am not angry just feel like they must think I am a nut.

I don't even know what I want to happen. I don't want another pull through, but I am not happy at the idea of her having the issues she is having now for the rest of her life (constipation and painful bm).

Sometimes you can't win for losing.

Do I dare even blog this...

I am hesitant to even start. I am tired and really should just go to bed but I feel the need to update about Hollyse.

It all started last week when she started crying when she would go, you know. She would cry, a lot. By Monday I thought, hmmm...no bowel movement in 24 hours but really cranky. So I made an appointment, which was needed anyway for a growth check.

On Tuesday morning we headed to the pediatricians office. Thank goodness Dean insisted on going so someone else was there to hear all that was said. Her pediatrition was her usual, terrible bed manner self. But, we look past it because she has been on top of things. She didn't care about the crying during BMs (apparently I am stupid because many children do this I was informed). No need to worry about the constipation that is becoming a regular (no pun intended) occurance. Just give her papaya twice daily, it will be 'her' food. Oh, and those enemas her surgeon insisted she have if she hasn't had a bowel movement in 48 hours...that is too often. You CANNOT do them but every 72 hours at most, in fact, no enema use a suppository instead, enema is hard on the bowels. No, she doesn't get a prescription for saline, even though you are out, use pedia-lax. But what is in pedia-lax I asked, the pediatrition said "I don't know". Can I get a prescription for the saline then? She asked "Do you even need a prescription for the saline?" Yes. "No, use the pedia-lax or baby fleet".

We took Holly home, made some calls, found that she had a standing prescription for saline, picked it up and snickered wickedly.

But then the day became night, and I went to a meeting. Dean went to dinner with a friend. Amanda was taking care of Holly. She was grumpy, crying like a wild animal in fact and then had a small bowel movement. She went to sleep. Woke up again, cried like a banshee, had another small bowel movement and shook with pain when her bottom was wiped. Then she woke again, screaming hesterically with yet again, another small bowel movement. Dean came home and I was not long behind him. We found Amanda, upset, with Hollyse on the changing table screaming like someone had tried to do surgery with no anesthesia. I took over, immediately gave her a liquid suppository because I thought there is no way I am getting 35 ccs of saline in her with her screaming and writhing like this. She bawled for another 10 minutes, then had a blow out, then another, and another...and then another in the morning. She quivered and writhed as we wiped her bottom. It was burned from the acidity.

Ya, good thing I didn't wait 72 hours dear doctor who is ignorant of Hirschsprungs.

I mean really? Seriously? Ignore the surgeon and do what you say? I just don't see that happenin' ma'am. I mean, the surgeon is her doctor, and I mean he is THE man. No Hirschsprung patient can be without one excellent surgeon. He's the 'go to' man.

You, my friend, are fired.

Happy Birthday to my best friend....

Happy birthday Dean-O! You are such a wonderful husband, father, grandfather, son, and friend!
We are privileged to share your special day.

Much love from those that share Chez Waldon with you.

Intentional Planner

This planner is incredible. I know I have said it a few times already, but you really can't understand until you get one.

You will not regret it!

Planning, and Menus, and Diapers Oh My!

I have been planning lots. It is the only way to get through the holidays with some sanity left. So, I plan. I have been planning school, meals, shower time, holidays, laundry times, housework in general times...just a whole lotta planning. Honestly, I find that keeping on top of my schedule really keeps things running smoothly.

One of the biggest deterents to scheduling is the phone, another is the computer. I tend to avoid both knowing it will suck me in. If a friend calls, I want to talk. If I get online to check on something, then before I know what's happened I have gone down one seriously long rabbit trail. If you are anything like me then you completely get what I am saying and might just be cringing just a little bit. I mean, it is rather shameful that an adult can't manage his or her time on the internet and phone, but you are not alone.

Every fall I pull out my Saving Dinner

because it is a really great resource for those times when you don't have time to plan out a weeks worth of well rounded dinners. The cookbook is broken up into four categories: Fall, Winter, Spring, and Summer with eight weeks of menus in each category. Each week also includes a grocery list, nutrition information, and serving suggestions that are seasonally appropriate. The recipes don't call for canned (fake) food but fresh ingredients. We eat many more seasonal foods since using this cookbook than ever before. Now, in all truthfulness there have been a few recipes that we didn't particularly care for (and that is saying something since my children will eat most everything including sushi, yes all of them). But all in all it is worth its weight in gold.

Last Friday, August 7 to be exact, I put in a couple of orders. One of them was to


Glabal Enfante...They offered free shipping. Guess what arrived Monday, 3 days later? My order! I was surprised, and very. I like natural fabrics on my baby and so I do like the wool covers. Global Enfantes carries Sugar Peas


I put in an order about a month on Saturday, August 1st to Cotton Babies and my order arrived on Friday, August 7th. What is worse is the small print with Cotton Babies, a 10% restocking fee for all returns. Sorry Cotton Babies, I am moving on up to Global Enfante! I put in yet another order to Glabal Enfante, because they have NO restocking fee and care about customer service;) I will return the one item that was too big without a penalty for being a customer. Plus, I put in an order for an extra special something that I will share about when it arrives.

I have used cloth with all my children. To be honest, I used a diaper service for six months with my first two, but the next two I used cloth with through potty training. Now, with Holly, we had so much going on medically that I didn't use them as I normally would have, but we are back on track. Although, I will say with all the extremes (constipation and then the opposite) it is sometimes comical that I add more laundry to my 7 people household. We like cloth, we prefer cloth. Yes, so does my husband, he actually prefers the prefolds with pins...no kidding. We like the Cloth-eez Prefolds at Green Mountain Diapers. So soft and absorbent. The fit is great too. I use a Snappi as I get a much trimmed fit, but dh is better with pins, so we use both. Cloth is really not an increase in work. Think about it, throw a load in the washer when you get low. No running out at night to get diapers. There are so many choices in cloth that your head will spin. You don't even need pins or snappis, buy an all-in-one( a diaper with an attached cover and snaps or velcro closures).

I am very willing to do a give away, by the way. I will just put your name in a bowl Corinne, and draw it out. Any particular colors you were hoping for?

Completed project pictures

Another pair of Amy Butler pants for Hollyse...love those baby feet.



Noelle chose her font as well. I love how classic and feminine it is.



This is the bag I freezer paper stenciled for Carter Man. I allowed him to choose the font. I really like it, doesn't it look like typewriter print?

Homeschool planning...

I am hoping to wrap up my planning this last week. The operative word here is 'hoping'.

In all honesty, it likely won't happen, but I can dream.

I am actually enjoying the planning and taking my sweet time with it. I have all month and I have ordered almost everything except a couple things for Jacob. He is taking some tutorials this year. I am excited for him to get to know some other kids around the country and learn from someone other than dad and I. Actually, I fully plan on sitting through the classes with him and learning something myself.

We are going back to our Classical Education roots! When we moved I slacked off, mostly due to lack of support locally for this particular method. I didn't give it up completely but enough to be somewhat ashamed;)

I am just seeing that Classical works. It really does. It is actually a rather enjoyable approach.

Hollyse had a tough week. It was just, hard for her. Not only was she teething, but she had some pretty severe constipation. Her tummy just kept getting bigger until I had to intervene. Needless to say, she had a day of clearing herself out that left her tush red.

As a mommy, it always feels like you've failed if your baby has a rash. You feel as though everyone knows you 'must never change that kids diaper with a rash like that'...but with Hirschsprungs, a rash is a regular occurence. The surgeon told us to expect it, the other mommies who have children with this disease tell you to expect it. But, I still wince every time her bottom is red. In all honesty, she has been 100% less rashy than we expected and her surgeon is thrilled. But I still feel like a bad mommy. It never fails someone always has to mention how "my children rarely get rashes." Well gee, thanks for the encouragement. I think maybe the teething isn't helping either.

By the way, she has TWO teeth now, and she waves 'hi' and says "hahhh"...I love her so stinking much. She really is brilliant you know. What other baby at four months could grab their pacifier and put it in their mouth? What a genius!

I am digging that Intentional Planner. I am telling you, do your mommy self a favor and get one. I am editing and printing and organizing and planning like a nut. It is just wonderful!!!

I want to do a give away. I would like to make another quilt and give it away. It was such a fun project.

What do you think, should I distract myself with another sewing project for a give away?

I will never get my planning done if I keep this up....

I Won!

I am so excited that I won this helpful planner!

I have been playing around with it the last few days between sewing and school planning. Honestly, this is such a great tool for busy homeschool moms. I cannot encourage you enough to get one. Sheri Graham really did a great job with this planner. I have another planner she wrote here
I use it every year to plan my Thanksgiving and Christmas. Check them out!

I have been working on that quilt I shared in my last post. It is done! I am so pleased with how well it turned out. This was a very simple project that I feel a tremendous amount of satisfaction. In the photos above Hollyse is actually sitting on the blanket.

I also made Hollyse several pairs of little pants using the kimono style pajama bottoms in Amy Butler's Little stitches for Little Ones. These little pants took me literally 30 minutes, start to finish. The instructions were fool proof (trust me I would know). You can see in the above photos how sweet they are. I am making another pair in flannel.

I also did a stenciled book bag using freezer paper. Very cool.

I know that Summer is getting short so I am eager to finish many more projects before the start of school.

We use our crock pot quite a bit in the Fall and Winter months for easy, healthy, hearty meals. One frustrating situation I encounter with crock pot cook books is the use of canned soups. In particular, creamed, canned soups. I have one child who is lactose intolerant and another I suspect may have a dairy allergy. Why all the cheating in cook books? How about meals from scratch. All that to say I have been digging around the internet for how made recipes without the use of pre-made ingredients.

If you have any to share that would be lovely!

Two days in a row....

Are you amazed? I am. I don't know whats going on.

What a day! Some of the littles played in the sprinklers and one of them had many dirty diapers (guess which one). It always amazes me how quickly this child will get a rash if she has more than one dirty diaper a day. I do not have 100% confirmation through her Dr but another HD mom said after the pull through their poop is more acidic. Time and again it seems to be proving the case. Anyhow. Enough of that.

Let's move on to what I want to complain about.

Hmmm.
Let me think....
Uhhhh, well.
Yeah.

I have nothing. I suppose I could dig from other days but I won't.

I have a couple of projects right now that I am really wanting to finish. The first is this

I am actually about fifteen rows in, but I am ripping that baby tonight. I am just not happy with the center. I am knitting it in this using Rosebush.
Now, let me start that I am a yarn snob. I don't care for synthetic yarns but I just thought this would be a fun and quick knitting project. We'll see.

The project I am really jazzed about is this
I love this quilt and having never quilted in my life. I thought this looked simple enough. I'll post a pic when I finish.

Amanda is the computer geek around here and has been helping make some much needed changes to our blog.

Keep a look out!

This is sad, really pathetic excuse for a blog....

I say I am going to be 'better' about blogging. I actually DO mean it when I say it, but then the laundry takes over, or sewing, or reading, or grocery shopping, checking the mail, trying to figure out what my child is wearing, thinking or doing, wondering when my house will be clean, wishing I had a garden...I am really going off on a rabbit trail here. But, you get what I mean, no less than a million other things take over my life, completely. I know, I know, it really is no excuse. I only have a few children. Many moms accomplish much more than I do with a much larger family, so really what is my excuse.

Since you've cornered me, I will admit I have no excuse.

Okay, I can do better than that. Let me share a couple things. For one, I am not all about the sharing of every personal thought I have with the world. That is all good and well for many people and I see nothing wrong with those that blog all their daily thoughts, concerns, activities. But I am just not there. It makes me...uncomfortable. So, that is one hang up.

The other 'hang-up' is that this is a 'family' blog to share family things. I suppose it has been mostly a 'Hollyse' blog but she is a part of the family. So, I always feel odd about posting about the mundane things. For example, I am extremely irritated with Hanes. I am sick and tired of buying undershirts for my sons only to have them shrink in length but not a millimeter in width. The end result is something that looks terrible under a fitted dress shirt. No, actually the end result is a bunch of new rags for my rag bin. I discovered JCPenny undershirts and I am thrilled! They are nice, soft, and all seem to have gone through quality control.

But really, who wants to read about that. I could go on and on....my list of frustrations with baby products is astounding.

So, I just don't blog. I stuff all my frustrations (if you know me, then you know this is a total and complete lie) and think about how I would like to warn all the other mommies about terrible products. But I do nothing.

I could blog about my sewing, knitting, and more recently quilting projects. I could have shared the before and after of my organizing binge in the kitchen. I even took pictures at the Home School Convention we went to a few weeks ago and the delicious boxty's we have when we go to Long Beach.
An old poem says:

Boxty on the griddle,
boxty in the pan,
if you can't make boxty,
you'll never get a man.

I had it all planned out in my head. But, then I figured 'who would care'. To be sure I have plenty of complaints about the Hyatt Regency Long Beach, what a glorified motel that turned out to be. I took pictures of that too I fear. I should delete them, because who cares!

I often find myself folding clothes thinking about what I could blog about.

The idea of starting a personal blog has crossed my mind, but then what if I don't keep that up either?

For those of you still reading, I will share Hollyse is doing well. She has a new tooth. A lovely, pearly white one on the bottom. She is a crawler now, and what a tiny little doll she is! She is just pure sunshine and rainbows. Really, she is. I cannot believe she is almost 9 months. I have the cutest pictures to share and will as soon as I remember to ask my photographer to email a couple of the recent ones.

The one above is a funny one from yesterday...I love her laugh!

Happy 7 month birthday my buttercup

I never though she would make it, I didn't. I trusted God, but I just didn't think he would let us keep her. He did!

Thank you God!

I really need to improve in the blogging area...

I know it must be frustrating to not get updates. But to be honest we didn't have an update to give until last week. So here goes...

In a nut shell Hollyse's surgeon doesn't know how much more aganglionosis she has. He consulted with three other surgeons who had varying degrees of recommendations. One suggested the watch and see approach, another suggested he re-do the surgery using a different method instead of a pull through, and the last suggested a colostomy bag. Yes, I nearly fell over with the colostomy...you could have knocked me over with a feather. I am so, so grateful we have a surgeon who isn't like what you typically hear surgeons are like, scalpel happy.

He did mention something that really threw me for a loop because he has never said it before. The possibility she has Hirschsprungs through out her small intestines. Because she has this rare skip segment he believes it is possible she could have skip throughout, although unlikely. I think he shared this because she has thrown him for a loop everytime....he thought it was full colonic-but it was short segment...he thought he was being extremely thourough by removing more-biopsy showed nothing healthy. Then the whole skip segment. So, I think he just doesn't trust she is falling inside the normal perimeters of this disease.

Her growth will be monitored as slow growth is one indicator of her small intestines being affected. He also warned us to be diligent in watching for any signs of enterocolitis as that is major concern for at least another six months. But, overall he is very pleased, even with all the lack of answers and strangeness of her medical case.

We will be watching many things in the coming years as he assured us we have a long relationship to come. I knew that but it is hard naturally to not know where she is going to go. But I am thrilled that she is a growing baby who has really been healthy (outside of a major disease).

I really want to get the word out there about this disease. It is so rare and people need to know so that they can react quickly. No child should be lost for lack of response. It really bugs me that every time I type Hirschsprungs it isn't recognized in the spell check.

I will get some more pics up soon. I might even blog about something other than Hirschsprungs;)

Blessings,
Michelle

Long overdue post, but no news is good news sometimes!

Holly they first time she ever slept in her crib at three months old...


Big brother and big sister telling her not to worry, mommy won't leave her in there much at all...


Holly at 3 months
This dress should have been her Christmas dress, but she never was able to wear it. We made it a Valentines dress. She looks great in it!
Such a sweet little baby!


What a doll!


Don't you just wanna eat her up! Those little legs, oh my goodness! That happy little face is her standard.

Well, it is about time I updated this blog. I have been enjoying my family the last couple months and catching up around the house. I am still in the 'fog' of having a baby around the house. It has taken time to adjust to life with little Hollyse and all we have gone through.

Hollyse looks so great and it seems unbelievable she has anything wrong with her! She has such a terrific disposition and happy countenance. This child is really nothing like me!

Holly has recovered well from her surgery. She saw her surgeon a few times for procedures. They were unpleasant, but revealed very little scar tissue at that time and that is a good thing. Her last appt was about 8 weeks ago and her Dr told us the results of the pathology were not what we had hoped for. The pathologist could find no healthy ganglian in the 12cm section removed. What that means is, they didn't remove all of the affected tissue. So, more surgery. Yep, bummer. The other thing he shared is that it seems she has a very, very rare skip segment or zonal section. He has never had a patient with this and wanted to do some research before we jump into surgery. Realistically, she can go months without surgery (perhaps years even). But, that would depend upon other factors as well such as how well she tolerates solid foods once we introduce them.

At this point we are at a stand still. I would like the surgery well before we introduce solids (around 9 or 10 months of age). I will insist upon further biopsies and perhaps a contrast barium to see what her intestines look like. If it is inflamed that will help us determine the next step. Chronically inflamed intestines could precipitate other problems.

So, we wait as we have been and enjoy our little blessing. Specific prayers for absolute certainty that we haven't removed it all before more surgery. It would also be nice if we would hear from the Dr. soon as we have been waiting 8 almost nine weeks.

Hollys' surgeon became Noelles' surgeon when he repaired her bilateral inguinal hernias in January. It was a simple out patient surgery for Noelle and she is doing great. SHe is back to her busy self and doesn't have discomfort from hernias.

Amanda turned 18 in Februry and is finishing up her senior year of high school.We are excited to have our first home school graduate.

Jacob is still learning to play guitar. I actually enjoy listening to him play now! He surfs a little with Amanda but not as often as he would like.

Carter is a good big brother. He is learning to read and loves school! He has mellowed out some and it's a good thing.

Dean is traveling as usual. This week he took Jacob with him on his business trip and they spent some time with Grandmere. Jacob loves his Grandmere and I think he would go with Dean every week if he could hang out with her!

I will try to post a little more often now that the dust has settled some.

I promise!

Michelle

Prayer for baby Christopher

Please pray for baby Christopher.
Prayers for his family as well.

In order to protect his privacy I will not share anymore, but the Lord knows.

Michelle