New Jersey Appointment

It has been a while since I last posted. Things have gotten really crazy around here. Days fly by and I always have the intent of doing things after putting the kids to bed but some how I always manage to fall asleep with them.

We made it to New Jersey in one piece and Hayls decided that crying most of the day was the in thing. So it made out trip even more crazy. We are back home and I am trying to get her settled and the crying back down to a minimum.

For now I will give a short update. Our appointment went as best as it could with a toddler crying the entire time. Basically my brain turned into mush and I tired my best to keep it working....lol....

We finally got our official diagnosis for both kids: FPIES.

That said FPIES is a world of mostly unknown and the information out there is work in progress via research. Our main source of help has been other FPIES moms and families and this will continue to be our main help.

We finally had a Dr. sitting in the same room with us who understood our every concern and nodded in agreement with everything we said! It was wonderful!

We were told however that they will never outgrow FPIES but it could improve once we achieved digestive tract homeostasis. Even when homeostasis is achieved anything could throw it off such as a stomach virus.

We are just happy to have a Dr. assist us on our FPIES journey!

Stupid mommy!

I think I was getting too comfortable with our unknown oranges. We had stopped because I wasn't sure. I was just getting to comfortable hearing other moms trying different things. I think I slipped into a state of "she is out growing this".

This morning at 1:14 am I was startled back into REALITY! Hayleigh woke up screaming, she wouldn't let my husband hold her she only wanted me. Which was ironic seeing that I was the one that most likely was causing the problem.

Go back to Friday morning: we are trialing carrot juice (yes we have to do a trial even though she can eat baby food carrots as the protein content may be different as the juice is raw). She loves the "idea" of juice but really won't drink it. So to make it taste better instead of the normal water with a touch of carrot juice I also added a touch of orange juice. This was the stupidest thing to do, because 1. I didn't read the carton to see if anything other than oranges were in there, I just assumed because we ALWAYS buy pure 100% orange juice. 2. I didn't call the manufacturer to see if cross contamination was an issue.

Back to last night she would settle and cry again and scream and just sit with her eyes open. We wondered was it a sore throat? After her nap on Friday she would only drink an oz at a time and I thought it strange. I also notice she couldn't scream as her voice was horse, she had her hand down her throat making herself gag. Everything was going in her mouth and I didn't even think. With the screaming she held her chest just once so I ran to get mylanta cherry supreme (which has more things she cannot have, but I had no time to mix calcium carbonate) while she cried some more. After 30 mins that didn't work she was still trying to settle but couldn't. She was farting and let out a little weird liquid poop. Eventually we got the motrin out (something else with stuff she cannot tolerate) but after 45 mins that worked and after 2 hours I finally put her back in bed next to me. So it seem yes she had a reaction to the 0.5 oz of orange juice in 8 ozs water after only sipping maybe 5 times for the morning.

This morning I get up and look at the orange juice and it has calcium hydroxide, malic acid, citric acid and vitamin D3! STUPID, STUPID, STUPID MOMMY!

The Battlefield

Some girls dream of weddings. I never did I always dreamt of having a baby. So when that day finally came I was exstatic. We had a difficult labour with my baby being sent to the NICU but we went home with a perfect baby and life was great for the first 2 weeks. I had taken care of a lot of babies since I was 10 even premies. I had more baby and child experience than all my friends put together. So if anyone could take care of their first kid with no problems it was me.....

Then all hell slowly broke loose............

Enter the battlefield: only I had no clue what was coming and no clue I was in a battlefield.

I never thought I would have a child with medical issues far less a rare one which there is no test to diagnose and one that most Drs are totally clueless to and have no clue how to treat.

The crying started, the multiple mucusy diarrhea, the reflux and all the other symptoms. I searched and found a formula with a different whey/casein ratio. I thought this may help. It didn't. I found reflux and her Pediatrician agreed. We started the medication dance. Then we did the tests and the GI said no reflux, but we tried one last med and it worked so it was GERD. Then enter food allergies/intolerances and the battlefield became a mess.

The battles with the Drs had me in tears many times. Since then the battles in my battlefield are too many to count. Seven Drs and counting and numerous battles with each of them. Some of them have been banished from the fields, one allowed back after redeeming himself and one fights by my side most of the time. She was unsure at first but now urges me forward at during the times I want to retreat.

We now stand at the cross roads: Hayls only has only the amino acid based formula and carrots. Ever day tears are shed by her, tears crying for "food,eat". We need more soldiers on our side and we are in search.......today we lost one we thought was on our side, but clearly they were not. This battle today had me in tears and angry that someone who is supposed to help their patient instead turned their back due to an over sized ego. I cannot describe how it feels....... if you have a sick child and have to fight to get them the help they deserve and have Drs tell you no.......only then will you understand.

Everything the Drs told us we didn't need we did.......the special formula......the medication.......the need to take food trails slow......and many other things

They told us she would out grow it by 4 months, then 6 months, then 12 months but we have reached almost 2 years and there is no sign of the problems disappearing. Now they are telling us "if" she does out grow it it won't be till she is entering her teens.......

The battle continues as we search for soldiers to fight not only one battle but now two battles on my one little battlefield..............

Consumption is a problem in more ways than one!

I am consumed..............

Where do you draw the line? When do you stop researching?

How do you make the choice between looking for answers for your children or spending time with them?

How does a marriage survive the constant pull of children living with a chronic condition?

Why? When? How? Where? ..............

Every so often I find myself in over my head with the issues the kids face. I become wrapped in a cocoon of MSPI, PI, FPIES, EGID, safe foods, failed foods, safe medications, reactions, was it a reaction?, was it something I did?, was it something some one else did?, how many oz did she drink over the last 24 hrs?, research, doctors, specialists, researching doctors, should we try this?, amino acid based formula, amino acid based food, is that a rash?, why is she pooping so much?, why is he crying so much?, are those dark circles under her eyes?, is that a new rash on his head?, is that blood in the poop?, is that mucus in her poop?, can I see the poop hun?, why is he throwing up more?, was it the knife I used?, did I wash my hands after eating and before touching her binky?....more thinking about being behind in research.....more feeling guilty for not knowing all the research..........my head starts to spin and before I know it I wish I was just sitting with the kids.....but then I sit with the kids and one weird poop, vomit, burp, or crying for no reason and I am back behind the computer looking for answers.....looking to other moms in the same situation and learning more each day.

It is a vicious cycle. Trying to find help for your children and just being able to do regular things with them such as feed them.

I have a problem........I am addicted to finding ways to help my PI children. Can you blame me?

What would you do if your child could not eat FOOD?

However I now try to limit my time on the computer. I limit my time on Facebook with the other moms, I limit my time spend researching so I am not as familiar with the medical terminology of their condition as I would like to be. I limit my time to blog. This way I get to enjoy the children as they grow. I become so consumed by my need to help them that I forget time is going by and I will miss Heath's precious smile as I walk by and Hayl's running to give me a hug while I sit at the computer. I will miss them.............I will miss them doing all the cute things babies and children do. So for now I take all the hugs, cuddles and smiles I can get. I try to bury the strong urge to do more research and I try to balance my time.

My husband stands by my side through everything and every so often he reminds me to put the computer down and just spend time with the kids. He helps as much as he can so I can get research done. I am sure however some days he just doesn't want to hear or talk about anything PI related because sometimes I feel this way. I try very hard to just push it out my head and carry on a "normal" conversation. However I have forgotten what "normal" families talk about. I am guessing they don't talk about poop, vomit, medical research, potential doctors to visit and what is going on with all the other PI babies we know.

I think the important part is I admit I have an addiction and now I just need to continue dealing with it. We need to continue coping and finding new ways to do it.

Life goes on and so do we......as a family we just need to keep evolving as PI consumes us.

Heavy hearts....

Playgroups and visiting other kids homes is something we don't do much of..................

You may ask why. My heart skinks whenever I think of it. Hayleigh is 19 months and now learning to interact with other kids, but food gets in the way. Toddlers naturally want to share their food and grab food others are eating. Food falls on the ground and ends up on their clothes, hands and face. For a regular kid this is no problem.

However for us these are all problems in more ways than one. To list a few:

1. Hayleigh looks on as other kids eat and says things like "Dylan eating food" and she cannot understand why she cannot have any. SHe looks on with interest and sadness at the same time.

2. Children share food with her and I have to run quickly before she takes it and it confuses both the kid and her. The kid is sharing and I am telling them no and for Hayls she is wondering why mummy just took the item she was going to receive.

3. Children share sippy cups and bottles and this is a big issue. The cups could have juice or milk in them. Even if it just has water other children have oils and left over food on their mouths and lips. Something as simple as Hayls sharing a cup with these things on them could affect a food trail and I then have no idea if she failed a new food or if something else caused a issue.

4. She still puts things in her mouth and crumbs and food items on the ground are something I constantly have to look out for. Try having 4 toddlers together eating and this makes it even harder.

5. Psychologically it takes a toll on her self esteem because she is set apart (even physically when food is around) from the other children.

It makes my heart sink every time I think of it and it feels even worse to have to put her through these situations. Hence I try my best to avoid them but at the same time I try to not avoid them because this just may be her life. I try to stay positive and not think of how simple life is for these other parents. I try not to think of how we are going to do her birthday without much food. I tuck away my heavy heart and move on because we have so much to be thankful for............

Feeding the ducks..............

Monday was a lovely day so we decided to take the kids to a plaza that has lakes and waterfalls with ducks, geese and swans. We decided to buy some "duck food" for Hayls to feed the ducks. I didn't think about it. I bought it and gave it to my husband to help her and before I knew it she was throwing CORN and who knows what at the ducks. I wanted to slap myself, why didn't I think of this before we let her feed the ducks. It was too late to take it away from her. How do you explain to a one and half year old that she has to stop feeding the ducks when the box clearly still has duck food in it. So we let her finish feeding the ducks quickly and then cleaned her clothes and washed her hands and tried not to worry.

Simple toddler pleasures such as feeding ducks and many other activities we have to think twice or three times before and after the activities.

She has been OK since but we need to be more careful and stay on top of things. This is just one more way these food allergies affect our daily life.

Goals for the New Year

With a newborn and toddler in the house one day just seems to fade into another right now. When night comes I am happy to have made it through the day with everyone fed and clean. Household chores, errands and other things fall to the wayside. I like things organized and put together but since having a child with PI and well, now two, I have learnt to pick my battles.

Any free time I have right now is spent trying to figure out our next move for Hayls and Heath who are both at different places on their PI journey. This year our goal for Hayls is to find one more food she can eat. If we come across more, yay for us, but our goal is just one. Our goal for Heath right now is to get him on a PPI medication that is corn free. We tried to wean him off totally but the poor little guy was in pain and stopped eating and sleeping. He started screaming a lot which was unlike him. However his rash started clearing and his poops went down to twice a day with just a little mucus. Once we put the dose back up he stopped screaming and went back to eat and sleeping ok. The rash is back and he scratches and digs at it. The uncomfortable constant spitting up is there and the nasal congestion. Hence a lot of my free time is spent figuring out how to compound a med for him and a lot of back and forth with different Dr's.

We are still in the process of trying to find an allergist who is knowledgeable about the whole EGID, PI, FPIES spectrum of disorders and our Ped. is very good at supporting us and trying to help us figure things out, but she too has limited knowledge of these disorders and is learning with us as we go. In essence we are still the ones steering the ship and searching for a Dr. who would take over.

Hayls did patch testing back in mid December and had 15 out of 16 positives. It is weird to say but I was relieved to finally have a test show something positive. We finally had an answer to something but no answers at the same time. The allergist who did the testing wasn't very helpful because once again he didn't seem to know much about PI just how to administer the test.

Finally we had a great Christmas in Florida with my family, Kenny's family and friends. I was good to catch up with everyone and the kids loved having everyone around. Especially Heath who just loves to chat.

We look forward to the year ahead to gain some answers but more so to see the kids grow and their little personalities blossom in spite of our challenges.

Thank you to everyone who offered us encouragement and support last year, hopefully this year proves to be fruitful on our PI journey.