Dealing with acid reflux

Since my son was diagnosed with acid reflux at about 4 weeks of age...I want to write about how we dealt with it. In time gone by...children with acid reflux were often dubbed as fussy, coliccy (sp?), having colic, and a hard to handle baby. But with lifestyle changes, acid reflux can be handled. Most of these suggestions were told to me by a doctor when he was hospitalized at a little over a month old:

1. SCHEDULE....put the baby on a schedule. Have him/her eat, sleep, wake, etc at about the same time. Their stomachs need to be on a schedule, and also given time to digest.
2. Position.....after eating we found that he needed to be upright, either in a car seat, something, that would prop him up so his stomach could have time to digest. Much jiggling, or movement, caused a spit-up.
3. I often would stop and burp him frequently during a feeding, and then have him sit on my lap for several minutes until I put him in a seat. Often if I rushed this process, the moment that I went to stand up, he would spit-up.
4. Have cloth diapers available. I put one on my shoulder, one on my arm, and even held one near his mouth to catch spit-up. He was very vulnerable, and easily spit-up so those were very necessary.
5. We limited who, and how much movement, and handling he had, especially in the early months. The more jouncing, bouncing, especially after a meal, the more upset he would be.
6. The dr. placed him on a very easily digestable formula. It was expensive. We qualified for WIC to help pay for his food.
7. We did not give him juice as a baby. Two different doctors told us that he did not need the acid, nor the empty calories. We did give water. Even to this day, his juice is limited.
8. When he started on baby jar foods, we found that he didn't like the 'meals', i.e. spaghetti and sauce. We limited the sauce meals, and just used table food cut really small.
9. We avoided spicy foods.
10. We made sure (and still do) that he eats an early supper, to give his body time to digest before bed.
11. We rarely went out late at nights....his system would suffer, tiredness, cranky, etc.
12. He was a fussy baby, but we tried the best we could.
13. He would often sleep better in his car seat, than laying down flat in his crib. The dr. said that was fine, eventually he would feel better in his crib, and he did! We also used a baby prop, (my name...I don't know the real name) to keep him on his side, when in a crib. Also once comfortable in a crib, we raised the head of the mattress, by putting either a blanket or a pillow under the mattress, so he wouldn't get caught in it. By having his head higher than the rest of his body, that allows for easier digestion.

Feel free to ask any questions, and I'm praying for all those reading this that have babies with acid reflux.

Has anyone read......

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For you

I am thinking and praying for each of you reading this blog. You may have a child who is struggling in some area of development. I lift you up in prayer today and asking the Lord Jesus to be a special comfort to you. I'm asking Him to give you courage, strength, wisdom and discernment as you work, teach, play with, care, and nurture your little one. May God truly bless you today.

New School

Today was my son's first day of school. He didn't want to go, he still wanted summer vacation....just like any other boy. I took him to school to make sure he got to the right place, and I still had forms to hand in. I was sad to see him go, I have to be honest, I even shed a few tears once I was back in the car and back on my way. I had a few errands to do, all the while praying and thinking about him. When he finally came home, and we asked him how school was, his reply was: "It was AWESOME!". Now he couldn't put it into words what made it awesome, but it was awesome! That makes a mom happy. I'm glad that he's going to a parochial school. Home schooling is not an option for us this year. I know he'll have the structure, firmness, and Christian values taught. I am glad that his teacher seems really nice. She wants to meet with me soon to discuss his educational needs. I think he will have a great year.

Thank you Lord, for providing this place for him. Please protect him, and strengthen him as he learns. Thank you for your bounty. Please be with all the other moms of special needs children as they homeschool, or as they send them off to various educational facilities. Thank you for them, and may you surround them with your love tonight. In Jesus Name, Amen.

The stigma of it all

Boy, do I know the stigma feeling. From both sides of the coin. I as a child had a speech problem, a significant speech problem. I remember having my classmates 'translate' for me. I remember not even being able to say my name so that the visiting nurse could know who I was. Then in 2nd grade, I had surgery to clip and stitch my tongue, to allow more movement. I also had speech class, now called speech therapy up through 8th grade. Now I'm married and have a son with his own struggles. I know exactly how he feels. I've been there. I know the frustrations of wanting to be able to do something and not being able, whether its talking, etc.

Society, especially today, places so much emphasis on being good, even perfect. The perfect hair do, the perfect body, good grades, etc. etc. When one is not perfect for whatever reason, they are looked down upon, often cast out, or neglected. When children, infants, toddlers, or especially school age children are different, not seen as normal, the stigma is felt both by the parents, and the child themselves.

I know this sounds an awful like a cliche...but it is so true...Jesus would never cast us out because we were different. If we didn't hear, speak, think, act, walk, move, 'right' ...He still loves us and cares deeply for us.....and get this-----He still DIED for us, for all of us!!!!

Now, when a mother is holding a child in their arms, and the little something inside them is telling them that vaguely that there is something wrong with the child...very often the little nudge is right. It is so hard, oh very hard to accept, that one's child is different, that they may require extra time, attention, services, etc. I've been there. I've cried. I was mad....and you know its perfectly okay to have these feelings even in prayer. Did you know that God's ears are big enough to take whatever feelings we have. He wants us to go to Him with these frustrations and even anger and express it to Him, even in tears. He loves us so much.

My son was a fussy baby. From day 1. We didn't know what was wrong. Our first child, not a happy contented baby. At two weeks he was diagnosed with an ear infection. At four weeks, he was diagnosed with acid reflux. He was hospitalized twice by the time he was 8 weeks old. He had undergone a whole battery of tests. When one is this young, a mom has very little time to think, to react. Sometimes situations call for immediate decisions, and feelings are put on hold. Later I felt, Later I cried, Later I was angry. I was exhausted, but I was upset, with everything. But in time as things calmed down, as lifestyles adjusted, as we began to find out what worked best with our little precious bundle...life began to take on more of a normal pattern. Did everyone accept it.....we moved to a new church(my husband is a pastor) when he was about 5 months old. At three months old, when my husband was candidating, it was shocking that there were negative voters. Those who voted were teenagers who told their parents that they voted no because they were not allowed to hold the baby. They indeed were not able to hold the baby, because when they wanted to it was just after a feeding. And when you have an acid reflux infant, a mom doesn't want that baby jiggled, bounced, much less moved until you are sure they have digested that feeding....the consequences...would be messy!!!!

We didn't go out much when he was really little, babysitters are hard to find for fussy babies. I was not working....the thought never even crossed our minds. He required too much care to go to work. Did I have hard days, yes, can I look back now with acceptance, YES. God gave us a wonderful, precious gift. But while he was crying it was not always easy.

Feel free to share your stories. My ears are open.

Not sure where to start

If you or others suspect that your child may be not developmentally right, talk with your husband, babysitter, and gather information. Find out what they are seeing. Then I would recommend a trip, or a phone call to the doctor. He/she can recommend further testing. I believe in many places, if a child is under 3 the county pays for the testing, not the family. In my area, if a child is under 3 then they come under what is called "Early Intervention". There is a coordinator assigned to the family. He/she will facilitate testing, paperwork, and help if needed.

In my son's case, he was approx 16-18 months(by the time all testing/paper work was done) when he was tested and declared to have a speech delay. He also had some large or gross motor skills delay, so he had physical therapy for a while, in addition to speech. Later when physical therapy ended, he needed occupational therapy to work with his fine motor skills. The coordinator worked on getting all the right people in to see my son. She also helped us to get a what I call a 'toy person' (my definition, I forget what the real name was). Every few weeks a lady would bring in a variety of toys for my son to play with to help him with either his speech or fine motor skills. I was allowed to choose the toys that I wanted, and that he showed interest in, and keep them until she came back. We also discussed what other toys she had available, and what she could bring next time to help him with his skill development.

I believe once a child turns three in all areas of the country, the jurisdiction goes from the county to the local school district. They then are responsible for overseeing his/her care, arranging for evaluation of development, arranging for services, etc... If a child is preschool age, then the committee of the school district is called PCSE~Preschool Committee on Special Education....if they are school age then the committee responsible is the CSE~ Committee on Special Education.

There are people out there in these various stages to help you, who are suppossed to help us parents, rely on them, ask questions, and ask the doctor questions.

Jargon

When one is dealing with a child who has struggles there is almost a 'secret' language that us parents have to learn real quick. It's a combination of 'medicalese' and 'educationalese'. Although my undergraduate is in elementary education, most of this jargon I learned first hand dealing with doctors, specialists, and other professionals throughout the years. If you have any other terms you want clarified, I'm not an expert, but post anyways, and somehow I or someone else reading this will help you. The terms that follow are in no particular order, and they basically are laypeople's definitions, (i.e. my simple definiton).

Chronological age: the age of the child/adult from birth, for example if a child is born Aug. 30, 2005, he will be 1 yr, 4 days old. etc.

Developmental age: the age of the child/adult as determined by his abilities. For example the above 1 yr old may only be functioning as a 6 month old in speech, thus his developmental age in speech will be 6 months.

Expressive language: this is the language, the ability to communicate-- the child speaks and communicates. Once tested the evaluator may determine that a three year old, for example has the expressive language capabilities of a 1 yr. 6month old .

Receptive language: this is the ability to perceive, to intake language....how well is a child understanding spoken and/or written language. Once again a three year old may have the ability of receptive language as a 2yr, 4 month old.

Fine motor skills: the skills that require the 'small muscles' to perform, writing, cutting, stacking, copying, tracing, etc.

Large or gross motor skills: the skills that require a larger part of the body to complete: sitting, crawling, walking, jumping, kicking, skipping, balancing, etc.

Prayer

If you want prayer for your child, please add to the comments section of this post. I'll love to hear about your journey and share with you in prayer. It can be hard at times raising a child that has their own struggles in life. I would like to come along beside you, and give you a shoulder to cry, talk, laugh on and pray together with you.

Welcome

If any of you are mothers with children with special needs, feel free to let me know, so I can continue to support you in prayer, and encouragement. My son has been thru the system. He was diagnosed with a speech delay at age 18 months. He had acid reflux diagnosed at 4 wks. of age. He's had ear tubes put in, and adenoids removed. He's been in speech therapy, occupational therapy, physical therapy. He's been diagnosed with central auditory processing disorder this past fall (2005). For the last two years he's received reading resource room, and math resource room at school. We've moved and changed schools. They'll test him once school starts to see if he needs math and reading help. He's been declassified, and no longer needs speech, physical, and occupational therapy. Feel free to share concerns, joys, and needs. I've been there...the waiting, the unknown, the frustrations, and everything. I don't know everything...but I'm a mom who is a Christian trying to raise a boy who at times finds school difficult. But, BUT GOD, is great its been wonderful to see the amazing spiritual conepts and observations that he's had down thru the years. It's been amazing!!!!!!

The beginning

I decided to start a whole new blog primarily designed to discuss the joys, concerns, journey of having a special needs son. I am blessed that the Lord has done many things through him. Jesus has shown me many spiritual insights thru my son's eyes. I want to share with you my journey and walk with you as you struggle with a child who may not be developmentally on target. I've been in the system so to speak since he was 18 months of age. He's now 9 and entering 4th grade. I lost count of the number of doctor visits, specialist visits, tests, CSE meetings, parent teacher, parent/principal meetings. Not to mention the hundreds of paper forms I had to fill out. He's been hospitalized and undergone tests. So feel free to share your struggles here. This is a site in progress, so don't mind the construction! May the Lord bless you.