Last Wednesday we took Jessica to the childrens hospital for her liver/stomach check up. The news we got wasn't very good .

Jessica's
platelets are dropping. Her GI explained, that as her liver gets worse and closer to needing a transplant, the portal vein and the other veins in her liver get constricted, so the flow through the veins lessens, which puts a lot of pressure through the veins in her chest, esophogus, and around her spleen, which causes verices that will eventually ruputure and cause a lot of internal bleeding that will cause her to start needing blood transfusions. He said at this point her liver is constricting the veins and causing her spleen(which is becoming severely damaged and enlarged) to trap the platelets inside of it and it is eatting her platelets(I'm not quite understanding the spleen eatting the platelets, but its what the GI said). We have to go back to the childrens hospital at the end of this month for ultra sounds and an endoscopy. The ultra sound will show how bad the flow is getting through her portal vein(portal hypertension) in her liver; it will also show if she has any blood clots in the other veins in her liver. They are doing the endoscopy to check on her verices and to band any that might need banding. She will be put to sleep again for the endoscopy incase any of her veins rupture during the proceedure or if any need banding. The GI said Jessica is getting closer to needing a transplant . These are all signs of a very diseased liver and as this worsens it will be what will cause her to need a transplant. Rob asked the GI if she might need a transplant this year and the GI said it could be possible but its too hard to speculate, so he said it could be this year, next year or a few years from now, but he thinks it will be a lot sooner than later. I wish her GI could tell me an exact date that she will need a transplant; at least then I could try and prepare for it all instead of just waiting for all these complications to pop up and get worse. Its so frustrating!! Just as you are getting use to one complication that is happening to her another one pops up and you start the whole feeling horrible about what is happening all over again...I need a break from all of this stress!...Jessica's little body needs a break from getting sicker and sicker  .

I am tired, I feel depressed, I feel like crying, but I feel
so odd and worn out emotionally about it all that my tears won't come out. We know what lies ahead, its not really a big surprise that she is getting worse and starting to have even more complications, but it is still hard actually seeing it start to happen and knowing its only going to get worse before it can ever get better and there is nothing you can do about it except to just sit and wait watching your child go through this, not being able to make it go away...as a parent it is heartbreaking .

 On the bright side....the rest of our day was nice . Jessica
got a doll, a box of crayons, a coloring book, a TY beanie baby lamb, and peppermint candy all from her appointment. I gave her a stuffed beanie baby St. Bernard . We went out to eat at Chili's which was very very tastey . We all shared one of their chocolate lava cake sundae thingies...yummy!!

Jessica has been experiencing some more issues with her liver disease and stomach. She was starting to have some bleeding due to her varices, so at Jessica's last appt. with her specialist, he wanted to change the dosage of the medication that helps her blood clot, so instead of 2 times a week, she now takes it everyday. So far it seems to be helping. As for her stomach issues, the medication helps some but still not fully, so this will be brought up at her next appt. I feel like a broken record at times...it seems like everytime I have an update to post here, there is some other problem to add  .

HOMESCHOOLING UPDATE~

My beautiful little girl is now a 3rd Grader!!! Jessica had her homeschool evaluation in September and did wonderfully  . Her evaluator said she was impressed with Jessica's reading and the neatness of her handwriting. We are very proud of her for doing so well even though she had so many sick days and extra trips to the childrens hospital for tests this passed year, she still did a great job with her work.

CONGRATULATIONS BELLA JESSICA!!! 

 

 

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Our 3rd Grade Curriculum is~

 

READING:

Bob Jones 3

 

LANGUAGE ARTS:

Learning Language Arts Through Literature 3 (Yellow Set)

 

HANDWRITING:

Pentime Cursive 3

The Complete Book of Handwriting

 

SCIENCE:

Apologia Exploring Creation with Flying Creatures of the Fifth Day

Lapbooks for Flying Creatures of the Fifth Day

 

HISTORY & SOCIAL STUDIES:

Lapbooks for Ancient Egypt, Egyptian Mummies, Ancient Greece, Ancient Rome, and Mythological Creatures

 

MATH:

Saxon 3

 

HEALTH:

Skills for Success Human Body

Lapbook~The Human Heart

 

HOME ECONOMICS:

Home Economics for Home Schoolers

Abeka Home Economics Food Preparation

 

FOREIGN LAUNGUAGE:

Rosetta Stone Italian

 

ART:

Life Pac Drawing Basics with Thomas Kinkade

Learn to Draw 50… Series by: Lee J. Ames

 

We have started some of our curriculum and love it! I feel really excited about this years curriculum. As all other homeschoolers know, a huge part of homeschooling is trying to find the right curriculum for your child(and you..lol), its a lot of trial and error, but once you find the right fit, homeschooling is extremely rewarding and can be a lot of fun. I really think this year is going to be our best so far curriculum wise.

 

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I would like to share something that I wrote a couple weeks ago while thinking about the things we have been through with Jessica's illness and how I feel about it at times~

 

~My Name is Heather~ 

Who I am is a mystery

I know not from where I came

But it doesn’t matter all the same

For now I belong in a family

A family made just for me

I hope it will never come to end

For my heart would surely never mend

My daughter’s life has been filled with illness

Dealing with this leaves me with sadness

I pray each day that she shall live

To live a long life

To sing and play

With her own children someday

But alas this may never come to be

For all we can do is wait and see

I thank God each day

For the child he gave me

She has filled my life with love, joy, and laughter

I now only long for a happily ever after

For she is all I could have ever hoped for

Beauty, strength, pure heart, and so much more

Wisdom beyond her years

A fact in which brings me to tears

A parent’s heart so filled with fears

I know that I am not the only one

For another mother that I know

Has recently lost a son

For her I wept in silence

While others slept through the night

I’m sure he is in Heaven

On clouds of snowy white

A little angel up above

Watching over his family with delight and love

For when a child is ill

A parent’s mind wondering, can’t be still

The thought their life may one day be taken

Leaves us with a heart that is breaking

Know matter how soft spoken

A family’s heart will be broken

Leaving gaping holes

In our hearts and in our soles

Please God don’t let it be this way

I’m asking this of you

As I hope and I pray

That our child’s life be spared

So very loved, cherished, and cared

Though I know it all too well

The blessings that you give

You can take away

Know matter if it be night nor it be day

But for now I will still hope and pray

Enjoying my child day to day

Even though she is very ill

And one day might be taken

To Heaven on angels wings

Oh how I hate the thought of such things

I will still thank you

For all my woes and sorrows

For the thoughts of many more tomorrows

Still fill my heart with joy and laughter

Only hoping it will last

This year, the next year, and many years after

Though some days my heart maybe filled with sorrow

I will still treat each day, as there is no tomorrow

 

BY: Heather B. ~Blessed Mother

 

Nothing new to really update at this point. Jessica is still having the same problems. I have to honestly say, I wasn't quite convinced that the gastroparesis was caused by Jessica's liver disease progressing, but I have noticed when she is in pain and can't eat for a day or two she starts having pale bowel movements which is a liver drainage issue, so it looks as though the liver symptoms and the gastroparesis symptoms are happening at the same time.  I will be mentioning this to her specialist at her next appt.

Jessica recently had an appt. with her gastro specialist. Her specialist said from a liver stand point she seems stable at the moment. I haven't received her blood work results yet. He also said he thinks the Gastroparesis might have been caused from her liver disease and it looks like this will be an on going problem with Jessica. He said in some children with Biliary Atresia, if they happen to get Gastroparesis, the Gastroparesis will usually start to gradually go away after a liver transplant. The medicine for the Gastroparesis hasn't been working, so as a last effort to get this med to work her specialist said to try giving it to her 3 times a day 1 hour before she eats for each dose. Getting the meds straightened out has been frusterating! Most of her liver meds she needs to take with food and the stomache one without food. If this med for the Gastroparesis doesn't work at the new dosage, her doctor has told me how to wean her off of it and start her on a new medicine. The problem with the new medicine is that one of the side effects is twitching like you would see in Parkinsins Disease. I really do Not want to give her this new med, but I will have to if the other one doesn't start working.

I know its been awhile since my last update on Jessica, but honestly not much has changed. Its hard to tell if the meds are working much at all for the Gastroparesis,  because she still has the same symptoms. Some days she eats really well and others she just can't eat. Another reason its hard for us to tell is because some of her symptoms can also be related to her liver disease. Jessica has a routine liver check up at the childrens hospital in January, so I'm going to request a repeat Gastric Emptying Scan to see if there has been any change since being on the meds. She is stable at the moment and doesn't seem to be losing weight but not really gaining any either. She still complains of stomach pain and discomfort, but this can also be liver related. I feel so helpless at times, because there is nothing I can do for her pains, nothing I can do will make her liver disease go away. Its a horrible feeling for a parent to watch your child going through something like this and knowing there is nothing you can do to fix it. A kiss won't make it go away. All you can do is sit back and hope and pray the doctors or specialists have all the answers and if they don't you just have to accept that too. Its not easy.

We started putting our Christmas tree up today. We got all of the branches put on the tree(its a fake one), so now its waiting for me to fluff it a bit, make it look more realistic. Jessica is so excited about anything that has to do with Christmas(or any other holiday), especially baking cut out cookies, doing crafts, and decorating the tree of course. We are going to make some bird seed ornaments to hang outside soon. Hopefully the squirrels will leave some of the ornaments for the birds(lol). I'm not too sure what else we might do; hmmm, maybe make some paper snowflakes to hang from the ceiling.

Homeschooling Update:

We are so proud of Jessica! She is reading so well now. Using the BOB books with 100 easy lessons book has been great for her. Jessica really likes the LLATL also. We have been very pleased with the curriculum choices we have made this year, except the spelling. We were using Spelling Workout, but I don't feel Jessica is really getting much out of it, so I have been making up my own spelling tests and wordsearch puzzles using Dolch sight word list; this approach is working great for her. Jessica wanted to try to do cursive writing, so I gave her the cursive writing workbook early; I'm so surprised by how fast she is learning cursive; she loves it. I'll have to buy her another cursive workbook soon(lol). For creative writing we leave little messages all around the house for each other; this is so much funand she doesn't even realize she is doing school work(lol). She is still enjoying Saxon Math, so I feel confident that we will stick with Saxon for at least the next few years. Everything else is working out great curriculum wise.

The Gastric Emptying Study showed that Jessica does have Gastroparesis. She was put on a medication to help her stomach contract, but at first the medication didn't work, so her GI upped her dosage last week, but as of now, it still doesn't seem to be working. If we don't see an improvement within the next couple of weeks, I will have to call her GI specialist to see what to do next.

Yesterday was bad day for Jessica. She couldn't eat hardly anything. I even gave her ice cream for breakfast; she took a couple bites and said her stomach hurt too bad to eat anymore. For lunch she had a few fork fulls of pasta and couldn't eat anymore. Guess what I gave her for dinner? A peanut butter milkshake(thats what she asked for), but still, she only took a couple drinks of it and that was it. Of course, I don't let her eat like this very often. She woke up complaining how bad her stomach was hurting, so I told her she could eat what ever she wanted, but she just couldn't eat.

This morning she is feeling a bit better and is eatting more.

Homeschool Update:

Schooling is going really well. We are still waiting for some of our additional history reading books and corresponding literature to come in, that go along with our history curriculum Story of the World. We are doing Ancient times this year.

Jessica's reading flow has improved so much since using the BOB books. She can read a book out loud without pausing much at all now. We are on the 4th set of BOB books and about 3/4ths of the way through the 100 easy lessons book. I highly recommend using these for begining readers.

Last year we did a study on metamorphosis of the Painted Lady Butterfly. We had so much fun doing this. Jessica has been asking to do this again, almost every day since the first day we let our butterflies go, so we have decided to do this again. Our caterpillars will be here tomorrow!   Last year our butterflies layed eggs, but we didn't have proper food or plants to feed the new little caterpillars, so this time, I ordered additional caterpillar food, to feed up to 80 baby caterpillars! We are hoping that a couple of days after our butterflies come out of their chrysalids, they will lay eggs, so we can raise a new generation of at least 80 butterflies. We are going to make a large butterfly house, to keep our butterflies in for a few days until we release them. I will be updating on the progress of our caterpillars .

First off, I'll start with the good news. The endoscopy didn't show any visible varices in Jessica's esophogus at this time; we are very happy about this.

Now for the bad news. The endoscopy showed food still left in Jessica's stomach after not eating for over 10 hours. Her GI specialist thinks she has a new condition called Gastroparesis.

Some info~ Gastroparesis, also called delayed gastric emptying, is a disorder in which the stomach takes too long to empty its contents. Gastroparesis happens when nerves to the stomach are damaged or stop working. The vagus nerve controls the movement of food through the digestive tract. If the vagus nerve is damaged, the muscles of the stomach and intestines do not work normally, and the movement of food is slowed or stopped.

Jessica is scheduled for a test called Gastric Emptying Study. This test will confirm the diagnosis, so the GI can start treatment. Until the test is done and we have the results and talk to the GI, I won't have any more information about this. We have never heard of Gastroparesis before, so we are quite lost at this point. The info that I have found on the internet about Gastroparesis doesn't sound very good at all. I will post the test results as soon as I can.

Jessica is also scheduled for the HIDA Scan to see if she has a blockage going from her liver into her small intestines. This test will be done the day after the Gastric Emptying Study; so we will be in Gainesville for a few days.

This month is going to be somewhat busy. Jessica has an appt. for an Endoscopy. This time they are going to put her to sleep for the proceedure. Before the Endoscopy appt., we have to have her pediatrician in town, make sure she is doing well enough to be put to sleep for the Endoscopy. Jessica also has to have her blood clotting time checked to make sure her blood is clotting well. If she is having clotting issues, she will be admitted to the childrens hospital for Vitamin K iv therapy, before the Endoscopy can be performed; this is done incase a varice bursts while the Endoscopy is going on. She will also be having a pre-op exam done the morning of the Endoscopy.

As for the HIDA Scan, we haven't had this done yet, but plan on having it done very soon.

HOME SCHOOLING UPDATE!

Jessica recently had her yearly evaluation and is now officially a 2nd Grader !  We added The Bob Books to our reading curriculum and she is enjoying them. She does great in phonics and can sound out just about any word, but still has to work on her "reading flow" a bit. I will be adding reviews of our other curriculum soon.       

Jessica's Gi thinks that Jessica might have an obstruction in the part of her small intestine that is attached to her liver, from her Kasai surgery. He said that this sometimes happens when chirrosis worsens, because the liver hardens and restricts bile flow through the attatched intestine. He wants us to keep a diary of the color of her bowel movements for a month, because they have been quite pale lately. After a month is up, when Jessica has a pale poop episode,  we will call the GI's office to bring in her in to the childrens hospital asap for a HIDA Scan. If the HIDA Scan shows an obstruction Jessica will need to have surgery to fix the obstruction.

Jessica's GI also wants to set up an appt. for an Endoscopy to check on her varices and he wants to make sure she doesn't have some type of infection or other problems starting in her stomach. If she has large varices, Jessica will need to have endoscopies more often to keep track of and band the varices when needed. The GI did say that he was more concerned about something going on with Jessica's stomach at this point; I'm not sure what to think about this.

Last Thursday Jessica woke up early throwing up. It only happened once and she isn't sick with a stomach virus, so we have been a little worried that she might be experiencing a small bleed, but we aren't sure yet. We will be taking her to her specialist soon for her liver clinic and bloodwork. I'm thinking we will be scheduling an endoscopy soon also, to check on her varices. Yesterday Jessica felt really good, but today she is acting very tired and not eatting much again.

For those of you that don't know, we are a homeschooling family. So, I will be updating on Jessica's learning achievements. This year Jessica was doing a 1st grade curriculum that ended up too easy for her and not as hands on as we like, so I put together our own curriculum for 2nd grade, which is working out very well for her.

Here is a list of Jessica's 2nd grade curriculum:

Math: Saxon 2
Reading: Spectrum Reading 2~ We also read together in the evenings.
Spelling: Spelling Workout B
Phonics:Spectrum Phonics 2
Language Arts: LLATL Red Program
English/Grammar: First Language Lessons for Well Trained Mind
Writing: Writing Strands 2~We haven't started this yet
Handwriting: Handwriting Skills Simplified B~ Skill Builders Cursive Handwriting
Science: Apologia Exploring Creation With Astronomy  

History: SOTW 1~ Kingfisher History Encyclopedia~ Usborne Internet-Linked Encyclopedia of World History;~I also bought The Complete Book of Presidents & States(workbook) to do as a seperate study.
Geography: The Complete Book of Maps & Geography(workbook)~ Encyclopedia of World Geography
Health: Human Body Grades 2-3(workbook)
Foreign Language: Rosetta Stone Italian
Art: Thomas Kincade Drawing Basics w/ DVD