Thursday, August 26, 2010

FEES study

Today we had our last and final test.  The FEES which is a fiberoptic endoscopic swallowing study.  Henry was a little champ.  They  put a little camara down the nose and into the back of the throat and have him swallow different liquids that have a food coloring in them.  This allows them to watch his swallowing function and coordination and to see if he is aspirating at all.   They tried the thick feed I've been making and even tried thinner.  Basically, he did great.  He had a tiny bit of residual that was in his throat but with several more swallows it cleared and even with the thinner liquids he never aspirated.  This is really great news.  It helped to clarify some of what we saw in the first swallow study.   I thought he had some issues with swallowing when we did the first swallow study.  However, this study today showed that while sometimes there is a little bit of liquid that pools, he seems to control his swallow and protect his airway; which is the most important part.  The ENT doctor told us that he takes really big sips of liquid and that we simply need to try to slow him down.  This can be done by using a cup where I control how big of a sip he takes.  Also, we can use a spoon at first for the thinner liquids to help him sip slower.   Also, with thickening foods we should just start slowly and work up to more textured foods.  It was so reassuring to hear that he does not really have ANY swallowing disfunction, just "inexperience" as the ENT doctor put it.  We couldn't have had a better outcome.  Really, this to me is also a huge blessing from the Lord.  With all that Henry has been through, the speech therapist said he could have lots of other problems.  It is really great that he doesn't have any adversions to eating and that he is so coordinated and has not lost the ability to eat normally, which can happen when you have had the challenges that Henry has.  We are so happy! 
So, with that, we are going home in the morning, so I better take off!  I plan to continue to write about our progress for those who are interested and also will try to post some pictures when we get home.

Thank you for joining us on this journey and for all your prayers.  I know God has used Henry to encourage many of you in your prayer lives.  It would mean a lot to me if you want to comment and put your praises to Him here on this page.

Wednesday, August 25, 2010

Another mirical

We had the scopes this morning.  Again, I could not be more impressed with Cincinnati Children's Hospital, every thing they do is completely top notch.  The nurses were very sweet and we also got to meet the famous doctor Cotton.  Our time with him was too brief to snap a picture, darn!  Fourty or so minutes after we left Henry in their care, we were ushered into a room with EVERY doctor on his team.  Yes EVERYONE was actually in one room at one time, communicating with me about my son!  AMAZING! 
Doctor Cotton spoke first, "the good news is, Henry does NOT have a cleft."  I am still processing this but as I listened to all of the doctors speak, I heard over and over again.  His airway is not swollen, his lungs are completely clear, his stomach and GI tract are normal and not irritated, he DOES NOT HAVE A CLEFT.
The doctors told me that tomorrows FEES study will help us to understand better why Henry is still having some problems with swallowing.  It could be lack of experience and they all were very positive that with some therapy, he will learn to tolerate liquids and solids.  Doctor Putnam, the GI doctor, told me that the G- tube could be removed within a few weeks since we don't need it anymore. 
I am still processing all of this.  The pictures of Henry's airway were so significantly different than pictures taken a few months ago.  The pictures from Denver were red with lots of swelling, these pictures showed a normal healthy airway.  God has indeed done a lot of healing in little Henry's body.  Thank you all for your prayers for us.  They canceled his surgery for Friday and instead we will be driving home.

Please pray for the FEES study tomorrow.  It can be a bit uncomfortable so I'm praying Henry will cooperate so we can find out what we need to know so we can move ahead with teaching him how to eat.

Oh, also today, Doctor Johnson, with whom we are staying, scrubed in on Henry's case.  He wasn't scheduled to be in the OR today, but he went in, just to be with Henry.  It was really kind of him and reassuring to know that he was looking out for him!  After I pick his brain tonight, I will update on any thoughts he had about what he saw in the OR today.

Thank you all and I'll let you know what we find out tomorrow.  Things are looking up!

Tuesday, August 24, 2010

Swallow study

This morning's swallow study confirmed that Henry is still having issues with swallowing.  Infact, they never even attempted to give him anything thinner than what is called "nectar" thick, because the "honey" consistency was going to close to his vocal cords.  I was very pleased with the radiologist and the therapists who took so much time to gather information about all the issues we've had with feeding Henry.  They told me that after the scopes tomorrow morning and another swallow test, called the FEES, which will take place Thursday, we should have the "FULL PICTURE."  They are very thorough here and it is so reassuring.

We actually are meeting with Pulmonary and GI as I type.  We just saw Doctor Putnam and Doctor Wood the pulmonary doctor will be in any minute.  These guys are the best in their field and I am tempted to ask for a picture because they are pretty much famous surgeons!  We could not have a better team of specialists working on Henry.  Also, the doctor we are staying with, is an ENT fellow and has done many cleft repairs himself.  He graciously took a lot of time last night answering all kinds of technical questions about how they actually do the repair, it was facinating and so helpful to have his expertise at my disposal.  Truly, the Lord could not have made this situation more perfect than it is.  It is so unbelievable how smooth everything has gone so far and I feel such a peace about going further. 

We will have a LOT more answers tomorrow afternoon after the doctors actually scope Henry's airway and see for themselves what he looks like now and rediagnosis his cleft and airway issues.  I will let you know what we find out, we are very excited to have the best of the best assessing him tomorrow morning.

The procedure will begin around 11:00 AM so please keep little Henry in your prayers.  Love to you all. . .

Cuddle time

The other night I was typing in the living room.  Aston, who is the two and a half year old son of the doctor we are staying with got on the couch and  sat next to me.  He looked at me for a minute and watched me type.  Then he took my arm and put it around him, and he shut my computer!  I got the clue that he wanted to spend some time with me.  He is the same age as my Andrew, and it was like the Lord gave me a little comfort.  Aston's mom was at work and my son was away from me.  So we sat together and watched cars and comforted one another.

Sunday, August 22, 2010

Letting go of idols

The family we are staying with brought us to their church this morning.    Ever since I arrive here I have had a sense of nastalgia remembering my college days.  For those of you who don't know the history, my family moved to Ohio after my freshman year of high school.  We lived in the very small town of Jackson, OH.  I graduated from high school there.  I went on to study nursing at Cedarville College here in Cedarville, OH.  So, I spent a lot of time in Ohio, but I haven't been back since I graduated college ten years ago. 

The church we went to this morning was a very small congregation, as are most of the churches out here.  They aren't huge like our churches in Colorado, where you can kind of get lost in the crowd if you wanted too.  People of course recognized us as newcomers and were very kind and welcoming.  We told them that we were here for Henry's surgery and they said they would be praying for him.  I feel that the Lord has been using the kindness of strangers to show His love to me.  Prior to us coming here I had a night at work where a Christian family did something similar.  I can't say a lot because of confidentiality, but basically this family was there because their child was in the hospital at the time.  I was their childs nurse.  I of course was there to take care of their child, but they used their time at the hospital to speak God's word to me.  The father of my patient was like a walking Bible.  Every time he opened his mouth God's word came out.  It convicted me greatly, that I too need to hide His word in my heart.  They also asked me to come to the room for a time of prayer.  I thought we would be praying for their hospitalized child.  Rather, they prayed for Henry and for me.  I can't hardly put into words what this meant to me and how it ministered to my heart.  This was right in the middle of that battle with the insurance company.  The Lord used them to comfort me with His word.

I have to admit that during that whole battle with the insurance company my heart was not always in the right place.  I couldn't believe the anger and frustration I felt.  It was not a coincidence that the preacher this morning spoke about Jonah.  God's word is a double edged sword and this morning it cut me to the core.  When I thought that God had closed the door for us to come out here, I became so cast down in my heart.  I also became full of anger.  And I told the Lord how mad I was.  I didn't understand why He would take us so far down a path only to then shut the door on us being able to get Henry the help that he needs.  Not only that, but I think that over the past two years, I have sort of kept a list in my mind of all the unfair things that God has allowed into my life.  Matt loosing his job, me having to go back to work with four kids, having a sick child, and then what I thought was God closing the door on Cincinnati.  I felt like God was giving me sort of a raw deal.  I guess I had some expectations about how my life ought to be, and God hasn't really been fullfilling my expectations.  In my anger and tears, I thought about the verses in Peter "Consider it pure joy my brother when you face trials of many kinds, because the testing of your faith produces perserverance . . ."  I thought, where is that joy?   I know from Paul's discussion in Philippians he found joy even in prison, inspite of his circumstances, why couldn't I? 

The pastor today talked about Jonah and how he got so angry with God because things really weren't turning out the way he expected.  He talked about how it takes the "hard stuff" of life, the disappointments like the loss of a job, and illness, and unexpected diagnosis, an attack on your reputation, challenges in your marriage, etc.   to reveal the idols in our hearts.  It's only when we are under fire that we see what our hope was in, rather than God.  I guess that I've been putting a lot of hope in a cure for Henry, I've been so desperate for it, that perhaps it's become all encompassing,  it's taken all my energy, it's become an idol.  When we want something so badly, when we want something more than we want to know and love God, it becomes and idol.  I hadn't thought of it that way, until today.  I knew I was having a temper tantrum this week, but I hadn't seen the cause as me having an idol in my life.   It was liberating to recognize it, and to be able to repent and know that, like he did Jonah, God still loves me.   It helps to know that God used Jonah in such a big way, to save a nation, even after the big fit that he threw.  I'm glad we have a Bible full of stories about real people with real problems,.   And God uses to do great things in spite of their humanness.  AMEN!

Also, it happens that there are several doctors that go to the church we visited this morning.  One of the doctors was actualy the preacher this morning!  Another  doctor was a friend of the doctors that we are staying with.  He is doing his residency and after I talked to him he wrote down Henry's name.  He said that he is working this Friday night and would come by and see us after the surgery.  It's just so cool to me how the Lord has put these people in our path.  It's such a comfort to already know several doctors who work at the hospital, including the people we are staying with.  Even more, they are believers and are praying for Henry! 

It has been so clear to me that God ordained this trip.  He is putting me at peace each day and confirming that He has it all worked out. 


"From the depths of the grave I called for help, and you listened to my cry.  You hurled me into the deep, into the very heart of the seas, and the currents swirled about me; all your waves and breakers swept over me.  I said, 'I have been banished from your sight; yet I will look again toward your holy temple.'  The engulfing waters threatened me, the deep surrounded me; seaweed was wrapped around my head.  To the roots of the mountains I sank down; the earth beneath barred me in forever.  But you brought my life up from the pit, O LORD my God.  Salvation comes from the Lord."  Jonah 2:2b-6a

Those who cling to worthless idols forfeit the grace that could be theirs.  Jonah 2:8

Saturday, August 21, 2010

At our destination

We arrived safely in Cincinnati this evening around 6:00PM.  It's been a long two days of driving.  I have to say that Henry was a little champ.  He was happy most of the way here and slept quite a bit in the car.

Another total blessing from the Lord is how the He provided a place for us to stay tonight.  My mother-in-law has a friend in her bible study whose son-in-law  is a doctor in the ENT program here in Cincinnati.  He and his wife graciously offered to host us until we get a room at the Ronald McDonald house.  I can't tell you what a blessing it was to actually walk into a house this afternoon after driving all this way.  They made us a home cooked meal and we sat down as a family and prayed.  It is amazing this kindness and hospitality they have bestowed on us.  It reminds me of how the early church was and how it is supposed to be.  It is such an amazing gift.  They have opened their home to us and have been so kind to us. 

So we are here and safe and exhausted.  Tomorrow I will try to post out the layout of this weeks schedule, it's pretty busy.  So for now, I am very thankful for a bed and a house and these sweet people, and rest . . .

On our way to Cincinnati!

I just have a quick minute to write before we head out again.  We just outside of Columbia Missouri and have about 6 hours left to reach Cincinnati.  We had a long day in the car yesterday, about 12 hours.  Henry did amazing and was mostly happy the whole way.  We have about 6 hours left today! 

Henry has a baby doll that my mom bought for the trip.  It has a hard face that looks real.  Yesterday he was singing to it in the car--so cute!  The weather was pretty much perfect all day yesterday as well.  Thank you all for your prayers.  As many of you know the insurance company had refused to pay for our trip.  No earlier than 24 hours before we left, we found out that Henry's pediatrician had called the medical director of the insurance company, explained our situation, and we were given full approval for the week of tests and surgery! 

We start our busy week of appointments on Monday.  I'll try to post the schedule soon.

Love to all

Saturday, July 17, 2010

Make your own G-tube feeds and baby food! Baby Mirical GROW!

I have always believed that what you eat affects how you feel.  I also think that the ability to heal and grow is related to what you put into your body.  For months our little baby Henry struggled to gain weight and grow.  In March he had a G-tube placed so that his lungs could heal from chronically aspirating.  I pumped and gave him breast milk through the tube for as long as I could.  Eventually, I think due to exhaustion, I just wasn't making any more milk.  We fortified a hypoallergetic formula to give him extra calories, however he still struggled to keep weight on and just wasn't growing.  After the failed surgery back in May, I met a new nutritionist while we were in the hospital.  She gave me a recipe for making a REAL food formula that I could put through his G-tube.  At first I wasn't sure what I thought about it.   Of course it is so much easier to just mix formula with water.  However, with months of Henry being "failure to thrive" I was willing to try anything. 

Armed with a recipe for optimal health I headed to the store to buy my fresh ingredients.  The original recipe calls for the jar puree baby food.  I have modified this to use REAL food because I feel like it is fresher.  I use baby food if I don't have the time or have run out of prepared food.   Some other tricks if you don't have a lot of time is to by frozen veggies that you can cook and and then puree. 

Whenever there is organic meat on sale, I buy some to make for dinner and I buy an extra pound to cook for Henry.  I  usually use Salmon, Lamb, Bison, and chicken.  Salmon has the omega oils, which  have so many wonderful benefits, including the reducing of inflammation in the body.   Which is why I always include a pediatric dose of liquid omega oil in my feed (you can get this at vitamin cottage in the children's section).  Lamb and Bison are supposed to have the highest iron content of meat, and since Henry was once anemic, I like to alternate those meats.   I cook them the same way I would for my family except I exclude the spices.  Then I puree the meat and usually use it's own broth left in the pan to dilute it.  This way, I can puree it to a very thin tecture.  After much trial and error, I have found that this step is really important so that your feed thin enough that it wont get stuck in the G-tube.  If needed, you can add water, juice or milk to thin the meats more.  Since I am concerned about Henry getting the most calories possible, I usually thin the meats with milk, rather than water.   I then take the pureed meat and pour it into individual ice trays.  Freeze it overnight and then put the different meats in labeled bags.  You can do this with the veggies too.  There is some prep work but I usually try to do the ice trays after I go grocery shopping or whenever I have extra meat and vegetables on hand.  This way, it is so easy to just grab a few ice cubes of meat and veggies, thaw and then make your feed!  Ladies, you can do this step to make your own baby food.  Just take your left over potatoes or meat and make your ice cube trays at night and before you know it you will have a whole stash of fresh baby food.  With organic baby food being 0.69 to 0.89 cents per jar, you will SAVE A TON of money--believe me it is worth it, plus it is SO MUCH healthier for your baby.   You can use whatever veggies you'd like when you make the G-tube feed, however I typically always use half an avacado as one of my vegetables and then usually do a squash or have some ice cube trays of a prepared veggie.   Yams and Sweet potatoes are the quickest baby veggitable to make if you are low on your premade veggies.  Just wrap a sweet potatoe in plastic wrap and put it in the microwave for about 5 minutes (more if it's a big one) and WAH LAH--smash it up and instant baby food! 

So that's the prep work so you have some fresh meats and veggies frozen and ready to go.  Now for the recipe.  Now, this recipe was given to me and the original format says it is 1000 calories for the entire 33ish ounces that you should have when all is said and done.  Thus is approximately 33 cal per oz formula.  However, if you are using half an avacado for one of your vegetables, I can assure you this will boost the calories plus add lots of good fats.   I have also use less cereal and more oil because the original recipe was too thick and kept getting stuck in the tube.

YOU CAN ALSO GIVE THIS BY MOUTH

This may surprise you, but this feed actually tastes great.  For those of you who have children who have to take thickend liquids, I have used simply thick to make this a honey consistency and I have spoon fed it to Henry and he LOVES it!!!
I honestly believe that you could get your toddler to drink this, because it is very sweet because of the juice and honey (or sweetner of your choice) that is used.  If you have a toddler that is underweight I would highly suggest trying to get him/her to drink this.    This homemade formula is much more nutritious than the toddler formulas on the market and will cost half as much to make yourself.  Once you get used to making it, it only takes about 10 minutes to prepare.

 You can modify this template to meet your childs needs.  I have sometimes used half prune juice in mine when I thought Henry was getting a little bit constipated.  I alternate veggetables, meats, juices, sweetners and oils to make sure Henry is getting a variety of nutrients.   For those of you who want to give this to your child by mouth, you can use yogurt or a bannana to make it thicker or more like a shake, or even try frozen fruit in place of the honey

AMAZING RESULTS
This formula has changed Henry's health.  He is active and growing and his skin looks amazing.  A few months ago, I looked at his pale skin and his thin body and was horrified that he would never regain his health. 

My secret ingredient is Braggs Apple Cider vinigar.  There are so many health benefits of apple cider vinigar, but you don't use the cheap stuff, you have to use the REAL Apple Cider.  For more infor see http://www.bragg.com/
It is known to help with acid reflux, which is why I use it in Henry's formula, because he has severe reflux.  I honestly believe this formula has helped him heal.  I just want other mom's to have the benefits of this formula, I wish some had given me this recipe months ago!

I am so thankful to say that Henry is completely free of all of his respiratory symptoms.   He is the healthiest he has ever been in his life.  He is off of all of his medications except the reflux medications which the ENT really wants me to keep him on until his surgery.  A few weeks ago I started feeding him by mouth again, and for the first time ever he is swallowing without any difficulty, coughing or respiratory distress.  To me this is a mirical!

So here it is for you to enjoy it's benefits!  I hope it makes your baby grow and thrive like it has Henry.  Please let me know how it works for you!  And let me know if you have any questions.

Approximately 1000 cal Gtube feed, or protein drink (33 cal per oz)

2 cups milk (soy, or regular)
1 cup juice (make sure you buy REAL 100 % fruit juice.  Read the labels because some are all sugar and only 15% juice. Even better make your own)
3 tablespoons of olive or coconut oil
6 tablespoons of infant rice or oat cereal (if your baby cannot tolerat this use a different starch like squash or sweet potatoe)
2  2.5 oz jars of baby food meat (or about 2 ice cubes of prepared meat or fish)
2  4oz jars of baby food veggies (or about 4 ice cubes of prepared veggies or 2 ice cubes and half an avacado)
liquid baby vitamin supplement (dose per baby's doctor or per weight specifications on bottle)
liquid baby omega oil supplement (dose per baby's weight/age specifications on bottle)

Optional secret ingredients (I believe these do wonders to heal the gut and boost the immune system)
probiotic powder (obtain from pediatrician--dose per instuctions)
Braggs Apple cider vinigar (2 tsp)

NOTE: THIS FORMULA IS INTENDED FOR BABIES OVER ONE YEAR OF AGE AND SHOULD NEVER BE USED FOR INFANTS.
Disclaimer:  This advice is not medical in nature and is not intended to replace the advice of your doctor.  All children who are failure to thrive or have swallowing problems should be followed closely by a doctor and may need to be evaluated by an occupational therapist of speech pathologist. 

Thursday, July 1, 2010

Boys will be boys

Again, I have to admit I've taken a little break from the computer over the past few weeks.  If there are any faithful readers out-there, I apologize and here by promise to write more frequently.  To be honest, it's hard for me to imagine that anyone actually reads what I post.  However, I feel that since I've had over 300 hits, I need to step it up a notch, least anyone be disappointed. 

In my defense, I've been busy trying to keep my home in order, balance time with my four children and I have been perfecting a recipe for the most nutritious pureed G-tube feed known to man.  I think I have succeeded.  That is with the G-tube feed (keep an eye out for a future post on the recipe).   As far as balancing time and keeping my home in order; well that is an on going struggle and may take decades to obtain.  I have also found that if any sort of order is obtained;  it is most immediately destroyed by my two year old son.  He is drawn like a magnet to anything orderly or clean and is compelled to throw or dismantle it.   Most anyone with boys knows exactly what I am talking about.  I have to say that before I had a son, I first had two girls, who seemed content to play with one item at a time.  Not so with boys.  In a completely opposite way they seem to find pure joy in dumping, kicking and throwing things.   In fact, I am quite certain that half the time my son isn't actually even playing with anything . . . he is just throwing it.

Baby Henry, seems to be suddenly showing some signs of this boyish nature emerging.  Since he is just thirteen months old, it is evident to me that it is in fact, part of his nature.  I certainly didn't model throwing or screaming over the past months in hopes that my son would one day perfect these skills. 

I don't know if you mom's of boys find this to be true, but I have found that boys seem to be much louder than girls?  The odd thing is, they also actually seem to scream more than little girls and at a slightly higher pitch.   I would never have believed this before I had sons of my own.   However, it seems everywhere I turn I meet a newly screaming baby boy.  Further, the amount of screaming boys I meet are increasing at an alarming rate.   I remember years ago my husband's sister told me stories of her screaming nephew.  I had met his mother and she seemed to be a responsible and intelligent woman, but I, as a new mother of a sweet and quiet baby girl, wondered how she could have ended up with a screaming son?   Lack of discipline?  How unfortunate.  Ah, the things we learn when the tables are suddenly turned!   Most recently a friend of mine and new mother herself came over my house for a play date.  Her adorable son opened his mouth and let out what is now part of my daily normal, a loud and proud scream.  She had this embarrassed look and said, "I'm so sorry, I don't know why he does that."    I am not quite sure why either, but I had hardly noticed it, since I am so accustom to it's daily display in my own home.  

Henry has recently taken up a sort of yelping and growling sound.  He does this when he is happy and he does it when he frustrated.   I think mostly, he just enjoys the sound of his own voice and the more he hears it the louder he gets.  As I have said before,but sometimes raising boys is more like raising wild animals than children.  This seems especially true when you get a good bite on the shoulder or leg as I did this afternoon.  That too is something that seems to occur more frequently with boys.  I really don't remember my girls biting me.  However, on several occasions my sons, while playing or even hugging me are apparently so overcome with affection that they just bite. . . out of pure excitement?   This too is something I remember "hearing" about as a new mom and my assumption was "oh, how terrible, that lady's son is a biter."  Never again, ladies, never again.   Funny thing is, I've never been bit by an angry boy.  The bite is always when I least expect it, we are playing and having fun and this BAM, teeth sink right into you arm!  WOW!  So I have come to the conclusion that there is such a thing as a LOVE bite.   However, I don't suggest testing this out on anyone you know, I don't think it will ever be accepted in our culture. 

Unfortunately, it seems that our experiences with men could have NEVER prepared us for raising young boys.  The truth is, no matter how quiet your husband is now, he probably was a squealer in his younger days. . . and a bitter too for that matter . . . just ask his mom!

Sunday, June 6, 2010

Pacifier dip

I want to thank all of you who have taken the time to read and keep up with us.   I apologize for taking a hiatus for the past week or so.   Work at the hospital has been steady and I've just been down right exhausted.  My days at home are super busy and by the time we get all the kiddos to bed at night I lay down and I just pass out!

I took Henry to the GI surgeon last week and his weight was down yet again.  I was really discouraged for a few hours and then I decided  to take matters into my own hands.  I calculated what I had been feeding him and decided I'm just going to up his calories a notch.  I also had a recipe from a nutritionist on how to make my own formula.  This change to homemade formula has not been without it's challenges.  For starters, it's definitely more time consuming.  I'm just not sure which part is consuming the most of my time.  The blending of the ingredients required to make my own formula?   Or the constant changing of bags and tubing because the new formula is so thick that it keeps getting stuck in the G-tube.  Okay, definitely the later.  Also, I've had a few incidents and apparently Matt has as well, where in an attempt to forcefully push the formula through the tube, the pressure has built up enough that it comes squirting out the other side of the tubing.  There really is nothing appealing about having pureed salmon and veggies shot up into your hair and face.  So, that has been both challenging and annoying.  On the flip side, I swear that little Henry is getting the semblance of a near double chin--so in that case I say it's worth the extra time and effort as well as change of clothes.

Also, in the past week, with Henry loosing weight and the doctors here seeming unsure about how to help him, I decided to just call Cincinnati Children's aerodigestive clinic and talk with Dr. Cotton's nurse myself.   Dr. Cotton is one of the leading surgeons in airway reconstruction surgery and Cincinnati is really the place to go for a laryngeal cleft repair.   I really felt that his nurse was thorough and took a lot of time gathering information about Henry.  She said she would present our case to the team and that they would review it and get back to us.  That was last week and I haven't heard back yet.  That's another reason I haven't written, because I was hoping to have more information for all of you by the time I posted again. 

So for now, we are waiting to hear what Cincinnati has to say about Henry and if he would be a candidate for their expert assessment of his situation.  Over the past few weeks I have come to a feeling that I need a second opinion and that I need to take Henry to the experts.  Hopefully, I will hear something early this week and I will keep you posted.

We also have follow-up this week with his pulmonologist and the ENT surgeon.  I have a lot of questions to ask them and it will be interesting to see how they answer. 

Further, I also contacted a speech therapist who just happens to be the mother of some kids that Matt used to babysit!  She was so helpful and told me that she was going to get in touch with Developmental Pathways to help get Henry access to therapy in order to prevent him from loosing his oral motor skills (since he isn't allowed to eat by mouth right now).  Also, she said she would refer him to a nutritionist who could come to our house to evaluate him.    Believe it or not, these resources are free to children who have issues like Henry does; I had no idea until a friend of mine gave me this information.

Basically, I'm doing everything I can to try to keep Henry well and help him gain weight.  I have to say the past week has been wonderful, he is breathing clearly and is finally NOT SICK with any cold or virus.   I feel like I've just been able to enjoy him, watching him change and grow.  He is becoming more and more a toddler everyday.  He is busy crawling and cruising all over the place and constantly babbling. 

A few really cute things he is doing right now: 

No matter what is going on, if you put music on he stops what he is doing and immediately starts to rock back and forth and dance. 

He has this cheesy smile in which he shows off his new over sized front teeth and it is absolutely adorable.

He has started a new hobbit of "dipping" his pacifier in anything he can.  This was started by myself in order to help him have "tastes" of foods, since he can't actually eat.  For instance, I would dip his pacifier in his milk so he could taste it, or put a drop of baby food on the pacifier while his liquid feed was infusing.  Now, every time he's hungry, he will hold out his pacifier, essentially asking you to dip it.  He has gotten to the point where in the morning, he holds it out when I have a coffee cup and will literally throw a fit if I don't dip it in my coffee.  So there you have it, the fourth baby gets to taste coffee every morning, because he demands that his pacifier be dipped, and because I don't have the heart to refuse him a little taste!

Sunday, May 23, 2010

A wilderness now, but a promise awaits

I don't have any pictures from the birthday party.  At 1:30 PM we called 911 because Henry had one of his "spells" again, and this time he looked really blue.  I wont belabor my frustrating day in the adult ER and then our transfer to Children's in which we didn't even see the Doctor until 11:00PM that night.  I struggle to find words to express the emotions I am facing:  confusion, anger and worry, and a deep sadness.  I was waiting all week to spend this day with my daughter Hannah who turned six and to celebrate Henry's day too.  I sat in the ER alone for the first four hours until Matt arrived after work.  I held my son and all I could utter to the Lord is "why?"  Silence.  

They sent us home this morning with the only suggestion being to stop feeding him by mouth until the repair in August.   This answer is so unacceptable to me.  To deprive my baby of food when he is reaching out and asking to eat?  It seems so counter instinctual for a mother to not feed her child.   Also, he had lost weight at his one year check and is falling off the growth curve.  I feel discouraged.   When asking the doctor what we should do when he turns blue again, he really had no answer other than, "I know these spells are frustrating."   A huge understatement on his part.

We are to follow up with our pulmonologist on Monday and Henry is on a steroid burst again.  He has a fever and is very lethargic.  I told the Doctor that I know this isn't just a cold or something.  Something is wrong.  I know it is not normal for a baby with a type one cleft to not be able to tolerate eating.  It is not normal for a baby to having blue spells.  I just need to find a doctor who cares enough to help us--something so easy; feels so impossible.

Thank you for your continued prayers.  Please pray for Henry's protection and for wisdom for me until we figure more out.  I don't know if we need to seek help out of state?   That is what we are discussing with the pediatrician.

Many of you have mentioned, "I don't know know why God is allowing this in your life."  I don't know the answer to that and I wrestled with Him all night with the same question.   I would not consider myself really charismatic, but this morning I just told the Lord:  I need a word from you. . . something.  Shortly after  I found a chapter in the Old Testament concerning Israel and their journey in the wilderness.  Oh, my, do I ever feel like I am in a wilderness.   The Israelites constantly complained and bickered and had the tendency to remember ONLY the good things about Egypt, forgetting that when they lived there they had been SLAVES.  They started thinking even slavery would be better than the wilderness, and years of NOT KNOWING what God was up to.   I know that is our human nature, we want to know and we want to know now!  God brought me comfort with this passage, and I will hold on to it for the time being:

"For the LORD your God has blessed you in all that you have done; He has KNOWN your wanderings through this great wilderness.  These forty years the LORD your God has been with you; you have NOT LACKED A THING."  Deuteronomy 2:7

Let me leave you with these truths: 

It is true that God has blessed me beyond measure with my family and the love and support of my extended family and my husbands family.  God KNOWS my wanderings, and there is comfort in that, in knowing that HE KNOWS what I'm going through.   He is with me and because of that, because of Him, I don't lack a thing.

Please hear this as well, as my blog will be completly in vain if you read it and say to yourself "wow, that woman is really strong."  Or "she must be a supermom."  Let me just say, if I was a supermom, I think my house would be a lot cleaner and my oven wouldn't have started on fire this week when I attempted to bake a Birthday cake.   I am hurting deeply right now.  I feel that I am close to a breaking point as I have never been before.  One thing and one thing alone sustains me, and it is the knowledge I have of God and the relationship I have with Him.  Along with that, my relationship with Him is not some sort of holy perfection.   I have struggled more over this past year with finding time to pray and to read the Bible.   I have struggled to believe and trust the words in scripture.   I don't pray ten times a day or have an hour long Bible study every day.  God is the one who has been faithful to me, not the other way around.  I have been angry with Him and I have let Him know how unfair I think life is. 
Like the Isrealites in the wilderness, I have wondered why He is keeping me in this wilderness and where He is taking me. 

There is something I know because unlike the Isrealites at the time, I have read the full story.  At the end of the fourty years there is a promise land, like nothing they could have imagined.  I know that at the end of this life, something better awaits me, and my son.  Not because of something I have done, but because of what Jesus did for me.  I'm at my weakest point right now, but God remains the author and perfector of my faith.   God has a plan that I can't completely understand because I am only human.   Someday when I see Him face to face, He will wipe away all the tears from my eyes, this life will seem like a distant memory and eternity with Him be when real life begins.  I expect the next few months to be hard, I'm gearing up for this walk through the wilderness.  I don't know where I am going, I feel blind, I feel helpless.   I trust the ONE whose leading me and that is why I grieve deeply, but I do not despair.    We live in a country that is full of so many treasures that even the poorest people are weathy.  We are surrounded by so many distractions that make this life on earth seem like it's all that there is and so when things get hard, it's hard for us to see beyond our present circumstances.  This isn't it.  This is just the wilderness, the promise land awaits.  If you've been thinking that this life is all there is, I hope you'll reconsider. 

"For God so loved the world that He gave his only begotten Son.  That who so ever believes in Him shall not perish, but have ever lasting life."  John 3:16

Thursday, May 20, 2010

Think before you bake

Okay, it's 10:00 PM and I was attempting to bake a cake.  The final outcome is yet to be seen.   It's really not the easiest of endeavours.  It's one of those doll cakes.  The cake is a huge skirt and then you stick the barbie doll head and torso into the cake and decorate to your desire.  That is if you don't start your house on fire first.  I'm having a flash back to the last time I tried to do this and apparently something similar happened.  I am not sure why I didn't leave myself a note saying REMEMBER DON'T OVERFILL THE CAKE MIX OR ELSE.  You can be sure I have it written on the box now!  I was confused when the cake mix did not quite fill the pan.  Why doesn't it give a warning "WILL GROW to 1000 times it's size in just fifty minutes."   Within fifteen minutes smoke started pouring out of the oven.  I opened it up and the batter was just pouring over the top of the "skirt mold" like a bubbling volcano.  The cake mix on the bottom of the oven floor was black and had that red center and resembled molten lava as it slid out the oven door.  I tried to shovel some of it out but I couldn't breath so I had to shut the door, turn on the fans, and get some air moving.  The whole house stinks.  I remember something similar happening the year we tried to sell our house.  I heard it was good to put cookies in the oven to make your house smell welcoming.  Apparently certain aromas somehow manipulate people into buying your home.  The only problem was I forgot about the cookies.  By the time I got things cleaned up the house had the fragrance of burnt cookies mixed with some sort of fruity bathroom freshener.  Needless to say we never got any offers.  

Maybe I need to rethink my baking endeavours, however, it is so much cheaper to make your own cake, unless you end up making extras or end up having to buy a new oven, or house for that matter.    Well, at least the cake isn't burnt it's just the oven that's on fire.  Oh, did I mention that since I THOUGHT I was short for Hannah's cake mix, I used Henry's cake as the filler.  So now Henry's cake is the molten lava at the bottom of my oven!   I'm not really sure what I am going to do about that.  I wanted to make Henry a dairy free cake because of his intolerance to milk so I bought a special mixture.  The party with our family isn't until tomorrow night so maybe I will try again in the morning.  In the mean time, in and attempt to save the skirt from utter ruin, I shoveled the excess mixture out into a glass bowl.  It has been returned to the oven and is cooking amongst the smoke and embers, I wonder if it will taste more like smoke than chocolate?  Well maybe that could be a new flavor, "smoked chocolate."

On a different note Henry has his one year check up tomorrow morning and Hannah has her six year check up.  I can't believe I have a six-year-old and that Henry is one!  He has been doing really well since we've been home and I want to thank all of you for your prayers.  I've started feeding him purees and soft finger foods and found out that he LOVES salmon!  He coughs when he eats and always sounds like he needs to clear his throat, however it seems that once he coughs he does sound better.  This is different than before we had the Nissan and G-tube, he used to just sound terrible all the time.  This was due to him drinking the thin liquids and aspirating.  For the past few months we have put all liquids through his G-tube.  I am going to talk with the pediatrician tomorrow about starting him on thickened liquids in a sippy cup.  He is over the cold he must have had and over all he is much improved.  He loves to eat and has picked up some sign language in the last week and it is so adorable.  He is so proud of himself when he signs "more" and "thank you."   I am excited to see what he weighs tomorrow and if he's grown any taller.  I will update you all and post some pictures of the Birthday party and final outcome of this insane cake if I can salvage it!

Thursday, May 13, 2010

Home at last

I apologize for just now sitting down to update everyone. Today felt like the longest day of my life. The CAT scan was delayed until 1:30PM. I sat in a quiet room for nearly an hour waiting to speak with the anesthesiologist. Henry fell asleep in my arms and I just stared at him. I pushed back his jet-black hair and studied the softness and peacefulness his face. He slept so deeply, content and trusting. Anxiety welled up in my heart. I felt like a huge lump was in my throat. I breathed deeply, in an attempt to hold back the floodgate of tears, built up over months of trying to keep it together. I fought an overwhelming sense of panic and delirium. I wanted to just run, and take him far away, from there. I rehearsed over and over in my mind the questions I had for the anesthesiologist. "If his airway is so reactive and swollen are you sure it's safe to sedate him again?” "Do you feel the benefits out-way the risks, is this test really worth it?" “What will happen if he swells up again?” I had this overwhelming sense that something horrible was going to happen. I prayed, "God help me keep it together, God protect my baby, help me ask the right questions, don't let them do this to Henry if the outcome will be disastrous."

The anesthesiologist had a calm and reassuring presence. I articulated my questions without emotion. He answered with confidence. I signed the forms, I kissed my son, and I handed him off to the nurse. Then I walked away. As I rounded the corner it hit me like a crushing wave. I couldn't hold back any longer and I ran to the nearest bathroom. I shut the door and I sobbed and I cried out "dear God, please don't take my son, please bring him back to me safely, I can't do this, I need you, please."

And then it lifted, the panic and the fear melted away. I know it was your prayers for me that wrapped me in His peace. I walked out and saw my other kids who had come to wait with me. In just a few moments they called me back. It was over and Henry lay peacefully in his crib. He was breathing on his own. He didn't even need any oxygen. And I thanked the Lord again and again for getting me through that darkness.

The rest of the day went by and then the pulmonary doctor came to see us. Do you know what she said? The CAT scan was normal. Henry's trachea was fine and there was no "other" defect as previously thought. She looked at his lungs on the scan as well and felt that in spite of the swelling that occurred the other day, his lungs looked good.

She told us she thinks he was getting over a cold, which could have possibly caused some swelling when they tried to do the surgery. She feels the cleft repair is absolutely essential for Henry and that it should be reattempted in July. The other good news is that the Children's Hospital in Denver just recruited a doctor from Cincinnati Children's. Cincinnati is known for their aero digestive clinic, and their expertise in cleft repair and airway reconstructive surgery. She wants us to see this specialist when he comes here and wants both him and our current ENT to work together to repair Henry.

The plan for now is to keep Henry on low dose steroids and to start SLOWLY feeing him some solids and keep giving liquids through the G-tube until the repair. So little Henry can have some birthday cake after all next week! I will put up some pictures of that for sure!!!

I cannot tell you, the relief I feel right now coupled with shear exhaustion. I am thankful that we only went home with the G-tube and not a trach! Which by the way, the pulmonary doctor said we do not need and WILL NOT need. I am so thankful that God has entrusted me with these beautiful children, all four of them. I am so thankful that He protected Henry and kept him from a repair, that had it occurred this week, most likely would have failed due to the swelling.

We now will have a chance to have a specialist from Cincinnati review his case, without us having to physically go to Cincinnati. For the past few weeks I have been thinking that I should just pack up and take Henry to the specialists in Cincinnati. Instead, God is bringing the specialists to us! I am thankful for the many people who prayed for Henry and for me. I cannot thank you enough.

We are home now and my heart is at peace. I am going to sleep now and Henry is too, most likely in my arms. I think I’ll hold on to him for a long time . . .

Monday, May 10, 2010

Today's turn of events

I am still processing today. I've been up since 5:30 AM, praying and waiting for Henry's cleft repair to begin. It's something we've been anticipating for months. It did not happen today.

The ENT surgeon explained to us that when she put her instruments into his airway, it became acutely swollen, to the point that Henry would stop breathing. She backed out several times and then tried to go back in, but to not avail. It was not meant to be. I am thankful for many things. Thankful that the ENT surgeon had the wisdom not to precede. She said that with the swelling such as it was, the stitches would not have held. Further, she was more concerned that his airway was compromised and it would not have been safe for her to continue.

The surgeon was troubled and disappointed. I could see it in her eyes and hear it in her voice. "I fix things," she said, "I'm sorry I couldn't fix this today." There was a look of defeat about her. I could tell she was burdened and now after this; I feel I really know her, she really cares about Henry. That comforted me.

Strangely, I am not completely surprised at todays events. The past week leading up to the surgery, I have been concerned that something like this was going to happen. Henry has been coughing more and more and having these "spells" at home in which he chokes and turns pale and becomes limp. When the surgeon approached us, before she said a word, I knew something wasn't right, I could tell by the look on her face. She also said she found another defect below his cleft, an area near his trachea that seems to be misshaped. She said she needs to consult with pulmonary and perhaps do a CT scan to evaluate what this is. She thinks it may have something to do with his passing out "spells." She mentioned Henry might need a tracheostomy tube in the future. This too, is not completely unexpected, but it is not something I take lightly. It brings a deep sadness to me that we would even have to consider this, and I will only consider after carefully evaluating all our options.

Tomorrow we will consult with cardiology as well. The ENT surgeon thought she saw something irregular about his heart rhythm and wants to have the checked out. I imagine we might be in the hospital for another night.

For now we are waiting. This seems to be a common theme for me this past year. What is to be learned from waiting? I believe many things, much of which I can't quite process this late at night, but I think I will ponder in days to come. For now I am at peace, and tonight I will rest. I am not sure what tomorrow will bring. Tonight, I have my sweet Henry. He is sleeping quietly, and I can hear him breathing. He is breathing. Thank you Lord.


Yet those who wait for the LORD, Will gain new strength; They will mount up with wings like eagles, They will run and not get tired, They will walk and not become weary.
Isaiah 40:31 (New American Standard Bible)

Sunday, May 9, 2010

A friend loves at all times . . .

A friend who loves you at all times, in spite of your shortcomings, is a rare treasure. I have such a person in my life. The other day, she came over and let me sleep before I worked my night shift. She has this special way of knowing what a person needs, without them having to say a word. When I got up from my nap she had cleaned and organized my entire house. The laundry was finished and folded. The toys put away. The kitchen cleaned. Lately, since the care of my son with tube feedings and medications is so time consuming; I have been overwhelmed with just the simple daily tasks. It was such a relief to wake up to a clean house. A huge weight was lifted off my shoulders.

This friend is such an industrious woman. I admire this about her and strive to show as much diligence. She is always busy: cleaning, helping, preparing. She has the gift of hospitality. From her, I've learned that hospitality is not just having a clean house, although she does. Hospitality is so much more; it's the way you feel when you are in her home- at rest. She has a way of making you feel you've come home, even if you are just over for lunch. You can sit down, forget your cares, and enjoy her company and of course the wonderful meal she's prepared. She's a great cook.

This friend has been there for me through everything; both good and bad. I can call her every day, and I do. She's probably the only person I could call at all hours of the night. I know she would come in an instant if I needed her. I can tell her anything, and she still loves me, even when I've wronged her. She loves me with an unconditional love; that though I try to return, I don't know that it will ever compare to what she's given to me.

This year with my son being sick, I have found myself in a state of need, unlike any I have experienced before. It is hard to admit that I am at a place where I have little to give in back return. Most days I am just trying to survive. To have the energy to stay awake, make the kids meals, and keep the house afloat. As a woman, it is often hard to allow others to help us. It is hard to admit you need help. She makes it easy, because I don’t have to say anything or even ask—she just steps up, and fills in. She has gone above and beyond to encourage me with cards and prayers. Her actions speak louder than words. She has cleaned my home, scrubbed my floors. She has taken care of my children and loves them as her own. She stayed at the hospital with my baby when I had a fever of 102 and I couldn't be with him. I don’t think I could have survived this year without her love and her support. She is my best friend, and I love her more than I can express. She is my mother. I am deeply blessed to know her and have her as my own. I hope I can be to my children, what she has been to me. I hope I can follow in her footsteps and be the friend to others that she is to me. I love you mom, Happy Mother’s Day.

Thursday, May 6, 2010

Why pray?

Today is the National Day of Prayer, so I pose the question with which I have wrestled: Why pray at all? During my twenty-five day stint at the Children's Hospital, I had a lot of time to think. After the doctor's left and it was quiet; I held my baby and listened to him breathing heavily as he slept. I looked at the bruises on his arms and feet where they poked him several times to start an IV. I looked at the tube that ran down his nose into his stomach so that he could receive the extra calories he needed to grow. I looked at the clock in anticipation of the next test Henry would have to endure and held back the tears.

I had been praying, for months, asking God to give my husband a job. I had cried out to Him to fix my baby, but Henry wasn't getting better and we still didn't have all the answers as to what was going on with him. I was tired, and I didn't feel like I could pray any more. I didn't have any more words, and for the first time in my walk with God, I felt numb.
I also felt deeply alone. Alone, because for a majority of days I was alone. Alone, because I felt isolated in my pain and sufferings and did not know many people who could relate to what I was going through. Alone, because I didn't FEEL like God was there, I didn't FEEL His presence, He seemed distant, if at all there, and silent.

If God is all knowing, than He already knows what I need and want. If God is all powerful, than He could answer my prayers. Yet at times He chooses not too (or at least not in the way or time I want). This has been hard for me to work out in my faith. Some people believe God will do anything we ask Him to do, and that if we pray and believe hard enough than it will come to pass. I don't believe that. I do however, believe God is all powerful, I do believe He is all knowing, and I do believe He loves me. This belief isn't based on my feelings. I have found over time, that my feelings change, but God does not. I believe these things about God because the Bible tells me, and I believe it to be His Sovereign Word.

So why pray, when our prayers may not be answered in our timing or to our liking? Here's what the Bible says:

Pray because


1. God is listening
"This poor man called and the Lord heard." Psalm 34:6
"His ears are attentive to their cry." Psalm 34:15

2. God will give you wisdom
Ephesians 1:17, James 1:5-7

3. When we don't know what to pray for God's Spirit will interceed for us
Romans 8:26

4. His Will is done
Romans 1:10, Matthew 26

5. Jesus did when He was overwhelmed and sorrowful (yes, He felt these emotions!)
Matthew 26:38

6. It can keep you from falling into temptation
Matthew 26:41

7. God will reward you
"When you pray, go into your room, close the door and pray to your Father who is unseen. Then your Father, who sees what is done in secret will reward you." Matthew 6:6
I don't think this is speaking of a reward as we think of a reward. I think the reward has to do with the fact that we are in correct relationship with Him through prayer.

8. Prayer leads to peace
"Do not be anxious about anything, but in everything by prayer and petition, with thanksgiving make your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and minds in Christ Jesus." Philippians 4:8-9

Over the past few months, I have questioned God with my doubts and fears and whys? He has answered some, perhaps not all of my questions. Undoubtedly, inspite of my questions, He remains God. The same today, yesterday and forever. I have had to work out my faith, I have been forced to ask the hard questions and I have come to the conclusion that I trust Him. I may not understand everything He does. His ways might not fit my "expectations."

I am still in the midst of a struggle, for I desperately want God to heal my child. I'm not sure how He will answer. Regardless, He remains God. I am thankful He can handle my questions, my fears and my doubts. I need not explain Him or prove Him. I will however, continue to cry out to Him. I know He is listening, I know He understands how I feel, I know His will will be done, and I have felt the peace that comes when I turn my fears and anxieties over to Him in prayer.

Wednesday, May 5, 2010

Symptoms of laryngeal cleft

So what in the world is a laryngeal cleft? I'm glad you asked. There are four classifications of clefts. ENT's use a measuring system to classify the type, such as Benjamin and Inglis's classification scale (see link). My son Henry has a type 1a laryngeal cleft. A laryngeal cleft is a communication between the "tracheal and esphogeal axis.[1]" These two structures are normally completely separate. A cleft allows liquids or food, to enter the lungs rather than passing straight through the stomach via the esophagus. Aspiration occurs when a foreign substance enters the lungs. Since infants or children with clefts are chronically aspirating; they typically present symptoms such as chronic cough, wheezing and recurrent pneumonia. The severity of symptoms may vary between patients. While one child may be in and out of the hospital with pneumonia and recurrent respiratory infections, another child with the same level cleft might only have minor symptoms and be relatively healthy. Many parents report that their child has a "rattle" sound in their throat or that they feel a rattle in their child's chest when they breathe. Unfortunately, these symptoms mimic other common childhood illnesses like reflux, asthma and allergies. This overlap in symptoms often delays diagnosis and many parents become frustrated in the interim.
If your child has some or all of these symptoms it is important to keep a journal of symptoms and when they occur. Consider keeping track of your day and what your child eats and drinks. How does he/she sound before she eats? How does he/she sound after? Does your child tolerate certain foods/drinks and not others? When did the symptoms begin and how long have they been going on? Keep track of phone calls you make to doctors and tests that your child has done. This way you can keep your child's information in one place and have one file to show other health care professionals. Keep in mind that you are your child's advocate. If you feel that a doctor is not listening to you, tell them how you feel, if they still don't listen, change practitioners. Be persistent. If you know that something is "just not right" with your child, keep track of the symptoms and keep the doctor informed of your concerns. Consider finding an expert. For instance, if your son continues to have respiratory problems and the pediatrician doesn't seem to know what to do, do some research and take your son to the best pediatric pulmonologist (lung specialist) in your area.
Some important tests in diagnosing laryngeal cleft might include: Modified Barium Swallow Study to diagnosis dysphagia (difficultly swallowing) and aspiration; Upper GI series to differentiate between reflux and other congenital anomalies such as tracheal esophageal fistula; PH probe to diagnose reflux. The doctors might run other tests such as an MRI to rule out central reasons for aspiration or endoscopy to assess the GI tract and other causes for swallowing problems.
The only definative way to diagnose a cleft is with a bronchoscope. This is a scope of the airway which is done under anesthesia usually by both the pulmonologist and ENT doctor. If your child was just recently diaganosed with a cleft, please see my links list for a support site and more information.


Disclaimer: the above information is based on personal experience and research. If you have concerns about your child's health seek medical advice.

References
1.Laryngeal Cleft
Stéphane M. Pezzettigotta, Nicolas Leboulanger, Gilles Roger, Françoise Denoyelle, Eréa-Noël Garabédian
Otolaryngologic Clinics of North America
October 2008 (Vol. 41, Issue 5, Pages 913-933)"

Sunday, May 2, 2010

G-tube drama


My baby has a G-tube. In many ways it has has been a blessing.  Henry has finally started to put on weight and is growing again.  His lungs now sound clearer than ever and that is a huge relief after months of coughing, congestion and wheezing.  The challenge now is, as a eleven-month-old boy, he is starting to crawl everywhere and is pulling up on furniture.  The feeds he gets throughout the day run over an hour; so every three hours I have to hang a new bag. He has an hour on the pump for his feed and then about two-half-hours off.  It makes for an interesting day. 

The other day he was crawling around and the tubing became disconnected.   He turned the corner down the hallway and I was following a trail of milk that was seeping out of his body!  It's hard for him to be mobile since I have to push the pump around with him all day long as he crawls around the house.  As you can imagine this also makes it hard for me to get much of anything done.  The day consists doing small spurts of quick mini-chores while attempting to avoid impending disaster. 

It goes something like this: Put Henry in his bouncy seat.  Start to empty dishwasher.  Henry starts crying. Stop what I am doing and put Henry on the floor.  Start to empty dishwasher.  Henry starts crawling away.  Push the pump towards him.  Take out a dish.  Push the pump closer.  Take out a spoon.  The tubing is stretching.  One more fork.  The tubing is stretching more.  Just put away a cup. QUICKLY!  AHH! The tubing is disconnected! Henry is off down the hallway.  Milk is leaking!  Catch Henry.  Reconnect tubing.  Carry Henry and the pump back to the kitchen.  Give Henry something to play with.  Hurry and clean up the spilled milk trail. Run back to Henry. Push the pump closer to him. Now hurry and empty the dishwasher.  Yeah right! Repeat everything all over again.

So, at that rate it takes about three hours to empty the dishwasher!  Ahh!

It's also hard to go anywhere because I have to feed him so often and it's not easy to take four kids and a feeding pump to the bounce house or the zoo for that matter!   So for those of you who come to visit me--THANK YOU SO MUCH!  And for those of you who are yet to visit me, you have fair warning--my house will not be clean, my laundry will not be done, BUT the dishwasher will be partly empty!