VII Quick Takes

I.  Our house is suffering from a serious case of winter stir craziness.  Oh, Spring, where art thou?  You can’t come fast enough!

II.  In lieu of the stir craziness, we are scheduling play dates, field trips, Mom’s day out.  Not that it seems to be making a difference.  I like my days at home and I don’t like to be gone all the time.  So I’m forcing the boys outside once a day….regardless of the weather.

III.  Our oldest son pulled his first all-nighter.  He went to a boys’ night with his cousin (though Awana) which included going out for pizza, a hockey game and then going back to the church for a night of games.  He did that Friday night and then Saturday night  Grandpa was babysitting and he was up until 10:30 p.m.!  And no nap was taken during the day.  Needless to say, he slept until 12 noon on  Sunday.  Yes, I let him skip church because he also seems to be suffering from some sort of stomach bug.  I felt he needed his sleep.  And I’m glad I did that because he was up ‘til midnight last night with stomach “issues.”

IV. I am busy researching digital cameras.  I am in desperate need of a new one.  I am looking at Canon, but I am overwhelmed.  I’m not sure whether I’m going to go with a point and shoot or SLR yet.  I thought a point and shoot, but Josh thought I should challenge myself and go for the SLR.  I am going to be taking a photography class this spring.  The winter class filled up so I have to wait—unless I find something else sooner.  I am very excited, but first I need to find a camera that fits me.  Any suggestions?

V.  Logan is suffering from a case of diarrhea and stomach pain again.  I’m sorry to say that it’s a direct relation to what we fed him, but I now know, without any doubt, that he cannot eat wheat.  It hurts his stomach, he’s bent over in  pain, he’s pale, he gets diarrhea and he spends all day on the toilet.  Poor guy.  He’s having a hard time being told no to his foods he could always have.  Every time he accidently (or purposely when we give in to his whining) eats something, his reaction gets worse.   I hate it, but at the same time I’m happy we know so he doesn’t have to suffer.

VI.  We went out with some friends Saturday night to celebrate some February birthdays.  Josh being one of them.  We went to the Texas Roadhouse (which I do not recommend going to on a Saturday night during prime dinner time) and he rode the saddle while they announced his birthday.  He was thrilled to do this—as you can imagine!  Then we went to Starbucks (for a venti white chocolate mocha—yum!) and then bowling.  It was a late night for us old folks as we didn’t even start bowling until after nine.  And Josh can never just bowl one game. 

VII.  I'm at #7 and feel I should go out with a bang....but I've got nothing. So have a great week. May God bless you richly!

Seven Quick Takes

1.  It is 5 p.m. and I am writing while waiting for chocolate chip cookies to come out of the oven.  The three older boys are outside playing in the freshly fallen snow waiting for Josh to come home from work.

2.  Camden has been sleeping since 1:30.  He has been very tired the past three days.  This cold seems to be wiping him out.  He fell asleep in my mom’s arms yesterday—something he just doesn’t do!

I was able to go shopping and out to lunch yesterday with another homeschooling friend of mine.  It was a wonderful, relaxed time (that went by way too fast).

3.  Josh is putting in piers this week and next….AND his hours are increased.  Yes, it is February 2nd and I just said he is installing piers.  Amazing how God blesses us through his work.

4.  I have been reading The Power of Prayer to Change Your Marriage and Love and Respect.  I highly recommend both of these books.  I hope to attend a marriage conference on Love and Respect this spring with Josh.  My eyes have been opened and I am learning so much.  I have a whole long post on marriage that is brewing in my head.  I just need the time to type it out.

5. I joined the women’s Bible study at our church.  We’re studying the book of Colossians.  I am thoroughly enjoying it and I recommend to any woman out there who is contemplating joining a Bible study, do it!!!!  You will be blessed.  It’s so cool to have women from all walks of life and all different ages sharing, encouraging and praying for one another. 

6.  I am fighting a cold.  The elderberry seems to be holding it off for the time being. 

7.  We eliminated wheat out of Logan’s diet as of last week.   He had been suffering from terrible stomach aches that were putting him in bed numerous times a day and frequent diarrhea.  Both of our families know that he is a stinky guy, also known as “Stinky Winky” to some. 

Since eliminating the wheat/gluten from his diet, the stomach aches and diarrhea have almost completely stopped.  It took until about last Thursday before I noticed improvement.

Yesterday morning he accidently had a bowl of cereal with wheat in it.  The tummy aches, awful gas and diarrhea came back.  He also complained of a headache.  I thought maybe it was just a tummy bug, but he’s fine today.  I do believe it was the wheat.  

Although I’m thankful to know what it is, I am not the least bit happy about it.  It’s hard to tell a carb-loving three year old that he can no longer eat the bread and bagels he once loved.  

I am going to “test” the wheat again in a couple days, JUST TO BE SURE.

It’s still there

Once again, just as I’m thinking Camden has outgrown his reflux—he’s been doing so great—it bites me in the butt and says, Hello, I’m still here to haunt you!   Darn, I hate that reflux.

He’s had two somewhat bad nights with difficulty sleeping, not wanting to lay down.  I noticed two days ago he was refluxing noticeably quite a few times and wondered what was going on.  Why would he get through a recent cold and a food allergy attack without a reflux flare up, and then suddenly a couple days later, the reflux is flaring up?  What gives.

Yesterday Camden seemed “off.”  I noticed he was clingy, tired, low key and sneezing.  I kept thinking, he cannot be getting another cold.  He literally just got over one a week ago.  Then his nose started running.  And sure enough,  another cold.  This one sounds more chest-related so maybe that is why it’s flaring up his reflux.  I don’t really know. 

It’s been three weeks since his last chiropractor appointment.  Maybe that’s why too.  I cannot let our busy schedule dictate when he goes to the chiropractor.  He was doing so good so I thought we could wait a week before going back, but then that week turns into another week.  This boy still needs that chiro adjustment to help him.  So yes,  it’s already on the schedule that he WILL be going to the chiropractor tomorrow. 

(Gosh, I’m definitely NOT going to get the  Mother of the Year award this month, hey?)

Poisoned!

I poisoned my son. 

At least that’s what it feels like.

Last night Camden had a terrible episode.  He was screaming so hard I could hardly hold him.  His stomach was hard as a rock.  He was arching his back.  The crying was so bad.  It was awful.

It was a very long night.  I tried to sleep in the recliner with him, but even after the crying stopped, he was so restless.  He was very uncomfortable. 

It wasn’t until this morning that the cause dawned on me.  Arby’s french fries.  We went on a family grocery shopping trip to Woodman’s last night, but before we made a stop at Arby’s.  I had fed Camden before we left the house knowing there would be no food for him to eat at a restaurant.  I know Burger King’s fries are safe and I guess I just assumed Arby’s were safe also.  He only had a few!!!!

Lesson learned.  Never, ever assume anything.  I’m sorry, Camden.  :(

Never a dull moment….

What a night.  Camden was up for the first time in a long time crying.  As he finally fell asleep, Josh was complaining of his head hurting so bad he couldn’t move, let alone sleep.  He wanted to take something.  I knew it must be bad then.  He cannot take most pain relievers because he’s allergic to them.  He insisted on taking something so I told him to take plain old aspirin if he had to take something.  He popped two aspirin and two Benadryl.  This was at 1:00 a.m.  At 4:00 a.m., Josh woke me up to tell me he was having  a reaction to the aspirin.  His throat was swelling shut, he couldn’t swallow and he had extreme pain in his chest.  I said, “We need to take you in.”  I figured he’d argue this, but he started to get dressed and I knew it must be bad.

I called Aunt M to come over but no answer.  I called my parents, no answer.  Hmmmm….people aren’t usually expecting phone calls at 4 a.m.  Finally we got a hold of Aunt M. to come over and stay with the boys.  Josh’s face was swelling up, his voice was changing and the chest pain was still there, where he was almost doubled over in pain. 

Aunt M. came over and we apologized for having to drag her out of bed so early, and then we headed for urgent care.  Unfortunately, the roads were covered in snow so our average speed was 40 mph.  When we arrived at  urgent care, we discovered they are not a 24-hour urgent care and they were closed.  It was about 4:30 a.m. and Josh suggested we go to Wal-Mart and get some liquid Benadryl.  He couldn’t swallow a pill, but he was certain he could get some liquid down his throat.  I hesitated but eventually agreed.  We ran in and got some liquid Benadryl and then started driving towards Waukesha to the ER.  Josh was telling me that he thought it wasn’t going to get any worse, but I said I was not driving home until the chest pain was gone and he could swallow.  I mean, we still had about 20 minutes until the hospital. 

When we were about 10 minutes from the hospital, Josh informed me that he was feeling relief and he thought the Benadryl was working.  He was able to swallow better and not bent over with the chest pain.  We also realized, after checking out our insurance card, that the copay for the ER was $200!!!!  Yikes, that’s steep!  I hate to say that we chose not to go to the ER because of that, but it did affect our decision heavily.

Josh is still recovering.  He is frequently having outbreaks of hives and itchiness, along with neck pain.It will take a while to get this out of his system.   He is swollen on the back of his lower neck.  I think he tensed up his muscles when he had the chest pain and pulled or aggravated something.  Whatever it is, it’s causing him a lot of pain.  I have suggested the chiropractor many times.

I also think he needs to go to his doctor and tell her what has happened (and that it’s not the first time).  Each time gets worse.  I think he needs to carry an EpiPen around or have one at the house at least, but what do I know, I’m not a doctor. 

Nervous…

I believe both Josh and I are getting the nervous parent syndrome.  We’re both questioning whether Camden needs to go through the endoscopy.  We’re both dreading the whole procedure.

It always seemed so far away and I felt like we could see where we were when the time came closer.  Now, that time is here.  The procedure is next week Friday.  I’m a wreck!  I am just dreading it.  I do not want to put Camden through it, but I also don’t want to regret it months later if we don’t do it.

Camden still has reflux flare ups (although he’s been medicine free for two months now), he still has yeast  issues, he still wakes at night crying, he still has motor development delays, he seems to get sick easily and stay sick longer.  These are all reasons to have the  procedure done.  To rule out anything more serious. 

But then there’s the momma bear in me that wants to protect Camden.

Please pray for me to know what the right decision is….whether it makes me “feel” good or not.  Pray for Josh too.  And give me any input you have.

GI appt. #2

Where do I begin?  I had a lot of information thrown at me today and a lot that has  happened in the past  couple days. 

Today was Camden’s follow-up GI appt.  This appointment was scheduled three months ago when we saw the GI for the first time.  I never thought we’d still need this appointment.  At the time I remember thinking, “I’ll make this appointment, but my baby will be all better by the time he’s one.”  Gosh, I was wrong.  Sound familiar?

We’re in the same place as far as the reflux.  It’s still there….Camden has flare ups from time to time and we deal with it.   He has also been having problems lately with his stomach.  So if we’re not dealing with one thing, it’s another.  The past two nights he has been up crying for an hour or more.  The first night I could soothe him with  nursing.  Last night I could barely hold on to him he was so upset.  Arching back, thrashing, screaming.  It was awful.  I finally had to face him forward, wrap my arms around him tightly and let him scream it out.  He wanted nothing to do with nursing.   We are eliminating all his allergen foods and also feeding him gluten-free after some bouts with stomach pain and diarrhea after eating grains.  The diarrhea improved  once the gluten was removed.  The stomach pain still seems to be there, and mainly when he eats table foods.  The food comes through undigested, just like it looked when it went in pretty much.  After these experiences, I’ve really stuck with jar baby food because he does okay with that.  I’m a little afraid to move beyond that. 

So that’s a bit of the history from the past month or so.  Stomach pain on top of the reflux.  And still sleepless, crying nights. 

The GI has recommended the following plan:

1.  Retest Camden for  food allergies. 

He wants to make sure he hasn’t developed any more allergies and see if the other allergies are still there.  He thinks Camden’s symptoms sound food-allergy related.

2.  Wean him from breast milk.

Although I have eliminated all dairy out of my diet, I am still consuming the other allergen foods.  Camden could be reacting to these through my breast milk, even if it’s just a small amount.   I have wanted to wean Camden by now, but he only takes 2-3 ounces from the bottle at a time so I’m always afraid he’s not getting enough.  A dietician has put him on a special diet, a bit more fat and protein, to help him gain some weight.  Although he looks healthy, he’s slowly going downhill.  He was born at the 75th percentile and is now in the 10th percentile.  We need to make sure in the next couple months he doesn’t go downhill anymore.  Pray that he will eat more and drink more.  He gets to a point now where he just refuses any more.

3.  Endoscopy. 

This is the third and final instruction from him.  It is the scariest for me.  I feel sick to my stomach thinking about  Camden going through another procedure.

An endoscopy is a procedure that will let the doctor see the inside of the esophagus, stomach and small intestine.  A soft, flexible tube goes in the mouth and down to the stomach.  Once this tube is in, the doctor can look at the lining of the esophagus, stomach and intestine on a TV monitor.  Camden will be asleep during the procedure.  The doctor will collect small samples of tissues to be biopsied.  He will send those to the lab to check for things like Celiac Disease, eosinophilic esophagitis, etc.  The scope will be able to tell us if Camden is still refluxing and if there’s any inflammation.  This is considered day surgery so there’s no eating /drinking after midnight and only clear liquids up to three hours before the procedure.  Same guidelines as when the tubes were put in.  Along with the endoscopy, he will also do a flexible sigmoidoscopy (which is a tube in the rear end) to check things in there.  Camden also has to be off his medicine for two weeks before the test and return to eating gluten containing foods.  This helps the doctor see if damage is being done.  I get why, but it seems bad to say, “Do this or do that to cause the damage so I can see it.”

I hate the thought of this invasive procedure being done!!!!

 

Now, here’s MY plan:

1.  Wean Camden from breast milk.

I agree with dr.’s reasoning and  then we will know he’s getting no allergen foods to contribute or cause any problems.

2.  Retest him for allergies.

3.  Take him off his Prevacid now…cold turkey. 

You may be thinking I’ve lost my mind right now (maybe I have), but I have reason to believe that this medicine may be causing the stomach issues.  If it’s suppressing the stomach acid, then he may not have enough stomach acid to help digest his food.  The GI didn’t agree with this philosophy, but like I’ve said before, I don’t trust doctors 100%.  I need to try this to know without a doubt that the medicine isn’t causing these problems. 

I have to do these things before I can feel okay going forward with the endoscopy.  If he improves, then we eliminate an unnecessary, very invasive procedure.  If he doesn’t improve, then we go forward with the procedure and find out what’s wrong in there.  At this point, we’ve been through so much, I don’t see why it’s not worth a shot. 

Please keep us in your prayers.  The next couple months may be rough.  The endoscopy is scheduled in three months.  This is so we have plenty of time to do the testing, weaning, etc.  I’m afraid we may have more sleepless nights in our future, but sometimes you have to let it get worse before it gets better.  Right?

I will start feeding Camden gluten again unless he starts having the diarrhea and stomach pain.  There’s no way I’ll continue feeding him that if it’s going to cause a lot of pain and suffering. 

I’ll keep you posted on how things are going so be sure to check in. 

Prayers are always welcomed!

UPDATE:
I should also add that I am praying and trusting completely on God to guide us in the right direction, to help us make the right decisions.

Camden's allergist appointment

Camden's allergist appointment at Children's was yesterday. Not too much new stuff to report. Dummy Mom gave him Benadryl the night before and apparently they have to be off of Benadry for at least 48 hours before allergy testing. Argh! I was told this weeks ago when I called to make the appointment and totally forgot. Camden had had two really bad nights where his ears really seemed to be bothering him. He wasn't sleeping longer than three hours. I gave it to him to get some sleep and help stop the itching! Oops! So we have to go back in two weeks. The allergist would like to test him for some environmental allergies--mainly animals and dust mites.

Camden's ears have gotten really bad. The allergist said he's never seen a problem in that part of the ears. And he's seen lots of different rashes! The problem is that it's gotten so bad that it's now turned into a staph infection. He gave us a prescription for some ointment to use on his ears to help clear up the staph infection. As to what's causing the itchy ears, we don't know. It's either the allergen foods I'm still eating and Camden's consuming through my breastmilk or an environmental allergy.

He strongly suggested I eliminate the other allergen foods (wheat, egg, tomato, cod, tuna) to see if it helps Camden. I responded to that by leaving there and going to the store and buying a bottle and formula! I just don't think I can do that. I feel terrible saying that because Camden will have to avoid those foods, but at least he gets to start from scratch. I'm 31 years old and have eaten whatever my whole life! I have learned to live with no dairy or dairy substitutes, but I just don't think I can do everything else. Camden did not take the bottle well. My mom tried giving it to him and then I tried. No luck! He screams when he sees it. I wasn't going to nurse him at all until he took SOME of the bottle, but after 5 1/2 hours, I gave in. I had so much to do and it wasn't the best day to attempt this. I am going to take a day very soon and anticipate him starving himself but just not give in until he takes the bottle. They say babies will eventually eat when they're hungry. I will believe that he will eventually take the bottle. I will anticipate it being a hard day of watching him cry. But I also know that this is what may be best for him.

Camden's ears already look so much better this morning. He was still up a lot last night though. In time.

June 2nd is our appointment for the allergy testing. And I now know not to give him any Benadryl for three days prior!

On a much better note, I did attempt to feed him some solid food the other night. I figured I would at least try every day. I wouldn't force him. I would just offer it. And guess what? He actually OPENED his mouth up and ate it!!!! Woo hoo!!!! He ended up eating half the jar of squash! Hooray! I was sooooo happy! I quit as soon as he wasn't opening up his mouth anymore. I tried again last night and got the same results. I pray that this is opening up a new door and we're on the road to eating solid foods!

On a not much better note, he has thrush AGAIN. We battled this in the beginning months and it was so hard to get rid of. It's back! Ugh. This is just another reason that I feel like I should wean him. I can't go down this road again! Camden has an overgrowth of yeast (probably from that month of being on antibiotics) and we need to get rid of it. I am giving him a probiotic but it's hard to get it in him every day when he wasn't eating. I'm hoping now that he's starting to eat food, it will be easier.

Keep praying! It's helping. I'm seeing some improvement in him. As of right now, I'm cancelling the ENT appt. for Monday. That was mainly to check out his swallowing problems, but he has been swallowing fine the past two days with his food.

He has also attempted to put some table foods in his mouth. This hasn't gone well at all. He threw up repeatedly after a small bite of a cracker. I just think he's not ready for that yet. I was proud of him for putting it up to his mouth and trying though. Hard to believe that this little guy will be 10 months old in five short days....

Have a good weekend! Tomorrow is my big rummage day down in Illinois with my mom and sisters. We call it the Motherload Rummage! Isaac has decided to join us this year. We'll see how he enjoys a day with all the girls--of course, his lil' baby brother will be with and his boy cousins. :)

GI appointment

Everything is a puzzle and we need all the pieces to get the big picture.

That's my evaluation of the day. Camden is a puzzle and we need to get all the pieces to make him better.

The GI was so very nice and friendly. I truly felt that he wanted to help Camden (and me). He listened very intently and asked me lots of questions. He referred us to an allergist and ENT, to which I said "DONE!" Once Camden sees those two, the three of them will put their reports together and see what they get.

He ordered a couple of things first though. He wants an upper GI done. This will tell us what, if anything, is going on and also if anything physically is wrong. I do agree with looking inside there and seeing what's going on, but I worry about it because Camden does NOT take a bottle. For this test, he's required to drink a bottle of Barium. Hmmmm.....I said he does take his medicine from the syringe so this may be the way we have to go. Second, he wants an evaluation done by a speech therapist at Children's, but we've decided to stick with the therapists we have already. He does want a swallow study done so I need to check and see if our therapist will do that. I'll find that out on Monday. Third, he ordered some lab tests be done. We're going to wait and do that next Thursday when we're there with the allergist in case he orders any lab tests. That way Camden is only being poked once. He wants a CBC (complete blood count) and his iron checked. He wants to make sure he's not anemic too. He put him on a prescription for a medicine that is basically like a muli-vitamin with extra iron. Fourth, he referred him to the feeding clinic at Children's. This is a team of doctors that will work with Camden on his feeding issues. Supposed to be remarkable! The only problem is that there is a six-month waiting list. Ugh. I believe that God has opened many doors though and if Camen truly needs this, he'll get in sooner. I really hope six months from now that Camden is eating food!

I feel that this whole thing is a process and we're on the right track. It's just going to take some time and patience to get there. I felt really good when the GI recommended the allergist and ENT. Just another sign that we're on the right road.

Meanwhile, Logan's been diagnosed with a sinus infection so he's on antiobiotics for that and also eye drops as he's still having gunky eyes. We had another bad night last night with him....crying and saying his throat hurt. Hopefully the medicine kicks in and tonight is better. One kid being up is enough, I don't need two up at night!

Camden's evaluation....and more

Camden's Birth to Three evaluation was yesterday. It went well and he has passed to the next level (not sure if that's good or not). He will be assessed on May 20th by a team to see if he qualifies by at least 25% or more for therapy. The coordinator felt in her gut that he would qualify, but the therapist has the final say. I think he probably will too considering we already had one PT tell us he should have therapy. The coordinator was more concerned with his feeding issues and wants him evaluated for feeding therapy also. Not a big surprise for me. Hopefully the speech therapist can come out on May 20th to evaluate him; otherwise, that assessment will be another day. We're going to go to an evaluation at HealthReach and see what they suggest too. I feel that they're a little more qualified, but not sure about receiving treatment there. Our insurance will only cover 20 visits for therapy so we may have to split up between HealthReach and Birth to Three. Camden was nothing but CUTE for the coordinator, flashing her all sorts of flirty smiles. :)

On another note....I called yesterday to schedule Camden's GI appt. I was praying so hard that it wouldn't be a month before we could get in. Ideally, it would be better to have that appt. first, as I think that's where we need to start. They had a cancellation for Thursday and we able to offer it to us! So, TOMORROW is the big GI appt.!!!!! Honestly, I am nervous. But I know it's the next step that we need. Even the coordinator from Birth to Three was relieved to hear we were going to a GI. Our appt. is tomorrow morning at 9:50 at Children's Hospital.

I feel that all our appointments go in order of importance: gastroenterlogist, allergist and ENT. Depending on what answers or info we get, I may cancel the ENT. We'll see. I feel that a lot of those symptoms are the result of allergies, but I'm no doctor.

Meanwhile, Camden is about the same. I have my journal to bring with tomorrow. We have so many appts. this month it's a little overwhelming. Next week Monday is the evaluation with the feeding therapist; Wednesday is the evaluation with the physical therapist; and Thursday is the allergist appt. so back to Children's.

On top of that, Isaac is having a terrible time at school and Logan's eyes swelled up the other night and continue to have green gunk and tearing. I've called the doctor about it and I'm waiting to hear. Josh and I both thought he was having an allergic reaction to all the pollen outside. He was outside a lot this past weekend. But now I'm wondering. He tells me his mouth hurts (which I interpret as his throat hurting) and is coughing. He cried on and off for half the night last night and then Camden was up twice. So yes, I'm tired.....but what else is new?!?!?!?!

Isaac had a field trip today to Madison. He's visiting lots of different places up there and bringing home a dog tag for Hunter from the Veteran's Museum. I can't wait to hear all about his day. He won't be home until almost 7 tonight!

That's about it. 'Til tomorrow.....

Some much needed support, help and answers!

Today I made an appointment for Camden to see a feeding therapist. I was very concerned after he freaked out (literally) from a Cheerio being in his mouth. He also is not allowing any solid food to be fed to him and I didn't know if I should continue to force feed or leave it be. I needed a professional's opinion.

My sister works at HealthReach which is a rehabilitation place. I called her just to see if she knew if Birth to Three would be able to evaulate this feeding issue on Tuesday. She suggested seeing a therapist at her work just for a screening. And she made the appointment for me to get in today! (Huge thanks, Bec.)

I expected to just get some tips and advice on what to do with feeding and got so much more! This therapist actually sat and listened to me!!!!!! For the first time I felt like she truly cared about helping get Camden better. She immediately said he needs to be evaulated by a gastroentrologist, ear, nose & throat doctor and an allergist. All his symptoms may be related to the reflux, but if something is not done now, he will never get better. Better yet, she's been down this road with one of her kids. She was able to give me actual names of doctors that she wants us to see. She suggested that Camden be on a combination of Prevacid and Zantac. Prevacid helps to keep the stomach acid from coming up and Zantac helps to soothe the irritation in the throat. But we'll see what the specialist (the GI doc) says about that. All these specialists need be seen to rule out any other contributing factors to his pain.

She also called in the physical therapist to do a quick screening on him. Within three minutes of her looking at Camden and moving him around, she could tell he definitely needed PT. She said he's pulling his shoulders back to close off his esophogus to stop the reflux. He'll probably never crawl because it's too painful for him. Therapy would probably focus more on walking for him. His muscles are weak though and because he never wants to be on his stomach, it's hard to strengthen them.

As fas as feeding, breastmilk is the best food for him! The therapist told me that I need to get through my head that nursing is his nutrition and what he needs. He does not need food-food now! I am supposed to put Camden in his high chair and put different foods on the tray, but NOT feed it to him. Allow Camden to do his own thing. He's developed a sensory disorder to feeding, foods, spoons, cups, bottles, etc. He sees it and knows he doesn't want it. Sensory integration disorder is a common thing among refluxers. We need to let Camden do his own thing. If Camden happens to get some food on his fingers and then puts his fingers in his mouth, that's a BONUS! But otherwise, just nursing for his main nutrition. We are going to be starting speech therapy/feeding therapy with him.

I can't tell you how wonderful it was to talk to someone who truly cared and wanted to make my son better as much as I did. I walked out of there and burst into tears. I know we have a long road ahead of us, but I finally feel like maybe this road will lead us in the right direction. And that there will be light at the end of this journey. Both the feeding therapist and physical therapist said that Camden will get better....there's just a process to go through to get there.

So as of now....his allergist appointment is on May 15th, ENT appt. is May 18th and I will know the GI appt. sometime tomorrow. All of these are at Children's Hospital. Please say an extra prayer for us on those dates.

Camden update

Camden's evaluation with Birth to Three has been schedule for Tuesday, May 5th at 1 p.m. There's certain qualifications he has to meet (or not meet) for therapy, but in talking with the coordinator on the phone, it sounds like Camden most likely will qualify. She asked me some questions about him and Camden wasn't doing anything that she asked about.

One thing is that he will never put any weight on his legs, so obviously he doesn't stand or pull himself up onto things. He does, however, bounce like crazy in his Exersaucer. I always thought that this must be a good thing. It meant that he can use those muscles if he wants to. The therapist/coordinator said she hears that a lot with babies like Camden, where their muscles are weak. So there went my philosophy that everything's fine!

He's still not sleeping any better at night. He had a couple nights that were really bad with inconsolable crying. His congestion seems to be worse, instead of getting better after two weeks of this, and he's developed a cough. I'm still journaling everything in a notebook (along with this blog). I think doctors take you more serious when everything's written down. His fevers are still there. I did stumble across a website where some people had unexplained low-grade fevers around the time of their seasonal allergies. Some were even run through numerous tests and no diagnosis was ever made. I wonder if he's having these fevers due to allergies. Another trial and error thing, but I'm wondering if we should test for environmental allergies sooner than later.

He isn't doing so great with the solids anymore. It seems he's decided that nope, he doesn't want solid foods. This is very frustrating for me as I was hoping this would help him put on weight. I'm still offering the cereal daily and adding in pears and sometimes it goes well and sometimes it doesn't. I hope he just gives in and decides it's okay to eat them. His gagging came back and I think that's what made him decide not to eat. For some reason or another, he's refluxing more the past few days. Choking episodes. It could be due to teething.

We also tried introducing the bottle to him last weekend and he downright REFUSED it. Got soooo mad at it. So I've decided to go with the cup. After all, he is nine months old and soon enough he'll be a year and we'll be weaning him. I might as well get him used to the cup instead. He's not thrilled with that either, but I keep trying!

I admit my patience is very limited lately. It's hard not to consume myself with everything. Josh didn't take the news so well, but he's also very consumed with work right now.

"This too shall pass...." That's what I keep telling myself!

Nine-month check up

Every child is different.  That statement has proven to be so true these past nine months. 

Today I left the doctor’s office, put Camden in  his car seat, got in myself and burst into tears.  I’ve never done that before.

Maybe it’s the weather…..maybe it’s my lack of sleep….maybe it’s because I don’t feel that good…maybe I just needed a good cry.

Camden is 19 lbs and 29 inches.  Appears healthy!  But he’s actually lost weight since he was in the doctor’s office two months ago.  This concerns me a little because throughout his whole reflux ordeal, he’s never had a problem putting on weight.  Why would he not gain at all the past two months and instead lose some? 

He’s not doing any of the developmental milestones that he should be, besides sitting up.  The doctor is referring him to Birth to Three to be evaluated.  I told her what I’m doing at home and she said that’s great, but he needs to be evaluated soon.  He should be trying to crawl and he’s nowhere close.  And he definitely should be rolling over.  If not back to tummy, then definitely tummy to back.  I’ve had this concern for a while now.

I also showed her my daily journal that I’ve kept.  In it I record all of Camden’s symptoms for the day.  Whether his ears are bothering him, how he slept the night before, literally ANYthing and EVERYthing, including taking his temperature daily.  I’ve noticed that for the  month of April, he’s had a low-grade fever every day but two.  The doctor said that’s not normal.  Yes, babies can have a fever with teething, but it shouldn’t last for 21 days!  She told me to continue to track it for another week or so and if he continues to have the low-grade fevers, then to call her.  His ears were fine so the fevers aren’t due to an ear infection. 

She also didn’t like how much he was up at night.  She suggested giving him Benadryl to see if that helped him sleep longer.   Although I’m really not to keen on this idea, I’m going to try it.  If it works and he sleeps longer, then his waking may be due to allergies.  If he continues to wake, then that’s not our answer.  Benadryl can either make kids tired or not allow them to sleep so we have to try it during the day first.  She said we’ve tried everything and we’re running out of options.  I thought, no kidding, we need to find out why he’s waking so much.  I’ve only been on this mission for months!

I guess I was upset because I’ve never had such a bad report with my kids.  Usually when the doctor asks, “Is he doing this…..is he doing that,”  my answer is always “yes, yes, yes.”  My kids have always been right on for development (besides the speech with Isaac).   It’s heartbreaking for a mom to know her baby isn’t where he should be. 

So we continue on……trial and error.  I ask for prayers that these fevers are nothing and that something “clicks” in Camden and he just starts doing all sorts of stuff!

Meanwhile,  I’ll be calling Birth to Three tomorrow to set up an appointment for an evaluation. *sigh*

Cry it out!

That's where I am with Camden....cry it out! After realizing yesterday that he was better and recooping from his cold, I decided I was going to let him cry a bit longer during the night and absolutely no more nursing every two hours, hour, whatever. He goes four hours during the day so he can certainly do this at night. I know he may be waking because of pain, but I don't want him to associate waking in the night and nursing. I don't want it to become a habit. I am understanding with reflux pain or ear pain. He is 8 months old, almost 9, and certainly should be sleeping through the night. In fact, he has slept through the night. It's just been a l-o-n-g time and that was during one of his good spells.

So my plan was this: Once I heard him crying, I would look at the clock and wait 10 minutes before I went in to him. If after 10 minutes he was still crying, I would go in and hold him, comfort him in any way I could without nursing him.

How did the night go? Well, Camden went to bed at 8:00. I woke him up at 10:00 to feed him before I went to bed. At 11:30 I heard him crying. I let him cry it out for 10 minutes. At the end of those 10 minutes, he was extremely upset. I went in and picked him up. I held him, sang to him, hummed to him, rocked him, danced with him, snuggled him. He would kind of clonk out on me and then suddenly wake up crying. I tried a couple times to lay him back down in his bed, thinking he was sleeping, but he only woke up and cried harder. I don't know how long I did this process, not longer than 30 minutes, but it seemed to work. He eventually went back to sleep WITHOUT NURSING!!!! Huge deal for me! I said a little thank you prayer to God and went back to bed.

At 1:30 I heard him crying again. This time I was willing to nurse him because it had been four hours since I nursed him last. Now, I know I said he should be sleeping through the night and not nursing at all, but he's not used to that and I didn't want to refuse nursing the whole night on our first night of doing this. My rule for the first few nights is no nursing at intervals less than four hours--same as the daytime! So he nursed and went right back to sleep. The next time he woke up was 5 a.m.!!! Yeah!!! May seem like no big deal to many of you, but it's huge for me. We're usually up every hour to two hours. I got almost four hours of solid sleep! I can't tell you the last time I got that much sleep at a time!!!

So hopefully this is a sign of better things to come....hopefully Camden will be getting better with his medicine and possibly outgrowing this reflux. Please! I have so many questions for the doctor at his 9-mo. check-up next week. I am contemplating putting him on formula now that we know what he's allergic to. I simply cannot avoid dairy, wheat and eggs! Dairy is hard enough. I wonder if he'd be better off with a formula. That way he would be getting nothing that he's allergic to. I also want to start solids again and see how he does. I noticed he is opening his mouth for his medicine now and he is putting more things up to his mouth. This is another huge accomplishment. Before I would have to pry his mouth open for medicine and also for cereal. That's why I quit. Not very enjoyable for him. I think he may be ready now though. However, he still won't roll over and screams bloody murder when I put him on his tummy. He won't put any weight on his legs when I try to stand him up, but he will bounce in his exersaucer so I guess that's a good sign.

I'm still researching reflux and allergies. I've met a wonderful mom who lives in Madison. She has an 11-mo. old girl with reflux and we've been e-mailing back and forth comparing stories. They're very similar and it's so nice to "talk" with someone who understands what I'm going through with Camden. We plan on meeting sometime soon. For now, I am thankful to just look forward to her e-mails.

That's all for now. Hopefully tonight will go even better for us!

Detective work

I feel like such the detective! I have determined the cause of Isaac's headaches. Besides seasonal allergies.

Isaac was suffering from terrible headaches and they were almost daily. I was determined to get to the source and figure out why. I know kids can suffer from headaches and stress is a big reason, and I suffered from headaches myself as a kid (still do!), but I knew there was another reason he was getting these daily headaches. I was watching him miss out on fun things and I didn't like it. I started asking Isaac questions about his headaches. When did he get them? At school, they always were in the afternoon after lunch. Never in the morning. That was a big clue to me! Isaac is a big fan of peanut butter and jelly. He doesn't really like any other sandwiches so this is his preference for lunch. Every now and then he'll have cheese and crackers, but PB&J is his favorite and he doesn't mind at all that he has it every day.

I also concluded this year that Isaac's seasonal allergies were most likely due to mold. He started having symptoms long before the trees were pollinating. Things were still damp and he'd get really bad on windy days. I looked up the pollen count and mold would be moderate on days he was bad. He is now taking Claritin for that and it seems to be helping a lot.

So I thought, hmmmm.....I had read there's a high mold count in peanut butter. I suggested to Isaac that we eliminate his peanut butter consumption for a week and see how he does.

Oh my goodness!!! It's like I have a different child!! Not only are his headaches GONE, but his energy and whole personality is different. I noticed his energy level seemed low, but I figured it was due to the headaches. He would walk up the stairs and get a pounding headache and find it difficult to breathe. He's now been peanut butter free for a week and he can run around and play and sometimes he doesn't even need his inhaler!!! It's even helped his asthma!!!

Now, I don't know if he's okay with peanuts or peanut butter ice cream or peanut butter crackers or anything made with peanut butter, or if we have to avoid peanut things entirely, but I do know that he will not be eating anymore peanut butter sandwiches!!! We'll have to experiment and see how he does with small doses of it. I'm just soooooo happy we've figured out the cause of these terrible headaches. I hated to see him suffering. He is literally so much more happier, full of energy and in a good mood! It's wonderful!

And the best thing is, we didn't have to pay any pricey doctor bills to get to the bottom of this. I was ready to take him for allergy testing, to the chiropractor, anything to get him better!!!

Hooray!!!!!

Allergy testing

Well, instead of going to dr. on Tuesday, we went to the allergist. I still can't believe that I got in on the same day I called. And I NEVER expected to have any results that day. Here's what Camden's allergic to:

-dairy (he was tested on three different milk proteins and he tested HIGH to all three)
-wheat
-eggs
-cod
-tuna
-tomatoes

They use a scale of 0-3. Zero being negative and three is highest. For Camden, milk was a three and all the rest were twos. I feel very overwhelmed thinking of all that he can't eat. So that's all I am going to say right now about that.

As for the reflux, he's back on his Prevacid. The allergist looked in his throat and sais it was red and raw from refluxing. I felt horrible!!! I've also been doing quite a bit of research the past two days on reflux and have learned a lot. I knew that viruses and colds affected reflux but babies with reflux are actually more suspectible to sickness because their immunity is low due to their body being consumed with the reflux. Teething aggravates reflux! It really is amazing and I am determined to learn all I can on it.