Seattle Appointments

I am sorry I have not been able to make it online much to keep everyone informed. I’ll get to the more important points in case Garrett wakes up before I can write much.

Garrett and Camden had their consult at Seattle Childrens last Friday on the 19th. It went well. We’ll talk about Garrett first. It was decided that Garrett needed and upper GI series done and an upper endoscopy with biopsies. Originally, his endoscopy was scheduled for July 15th because I specifically wanted Dr. Dennis Christie to do the endoscopy since he is familiar with Eosinophilic Esophagitus. Well, we got home that night and I realized it was going to be a very, very long wait since Garrett’s sleep and behavior have been tough. So, I called on Monday and asked them that if I didn’t have a preference for a doctor what was the soonest they could get us in? She said this week! I was so happy. So we scheduled his upper GI series for Tuesday the 22nd (a few days ago) and his endoscopy for Friday June 26th (tomorrow). It’s been a lot of early morning driving. We’ve been leaving the house by around 5am to beat the rush hour traffic. His upper GI series went well. He had to be off any liquids for 3 hours prior to the procedure so he was really hungry by the time it was our turn. We also got there super early. Our appointment check in time was at 9:30 and we were at the hospital by 7:00 but luckily they got us in early at 8:30. The upper GI series consisted of Garrett needing his shirt off and him being strapped down under a huge imaging machine. They took a before shot and then they strapped his arms above his head and had him completely strapped down, which of course made him cry. They then gave him the cherry flavored barium contrast and took pictures of him drinking it while tilting him to various angles. They also did some imaging with water. He would have been fine if it hadn’t have been for strapping his arms above his head. It wasn’t too traumatic, it was fine as soon as I picked him up but he was definitely not happy about any of it. Interestingly, the doctor that conducted the GI series said that the test showed that Garrett didn’t have any reflux. That is fantastic news but is confusing to me since the prevacid solutabs have seemed to help his sleeping a lot. I’m not sure what to make of that. I didn’t have the chance to ask questions but she was able to just let us know he didn’t have any active reflux.

Tomorrow we drive back down to Seattle for the endoscopy with biopsies. I learned yesterday that his surgery is scheduled with Dr. Christie anyway. I’m not sure how we managed that but I am really happy that he is still the one doing the endoscopy and that we don’t have to wait for a month. Our check in time is 7:30 and his procedure is schedule for 9am. So, we’ll be leaving the house by 5am again. It makes it kind of nice though because then Garrett sleeps for the whole drive there and typically is tired enough to sleep for the whole drive back home again. It’s a relatively quick procedure. He will need to be put under anesthesia and I can hold him while they do that. Then, once he is asleep we will pass him on to the nurse and they will take him back for the endoscopy. The endoscopy will involve placing a small tube with a camera on it down his esophagus, into his stomach and small intestine. They will take small biopsies to review. It’s about a 15 minute process. Then when he starts to wake up from the anesthesia I can go back with him again and then he will be observed for awhile and we’ll be allowed to go once he’s able to hold down liquids. We’ll get the results back about 2-3 from now.

With Camden it is more of a wait-and-see approach which seems somewhat torturous since the last six months have felt like a “wait-and-see” but the good news is that she does appear to be much better. The GI wants us to get her constipation under control so that we can see what, if any, of her symptoms are related to the constipation and to see if her stomach pains continue. If her symptoms continue then we will possibly schedule an endoscopy and colonoscopy for her to look for celiac or other issues. They might also order an ultrasound, etc. But all of her blood work looks good. She did have raised eosinophils on her last blood draw and they were at 6% which is only 1% above the accepted range. They want her to come back to Seattle Children’s when we do the review of Garrett’s biopsies. Right now we are giving Camden 1/2 cap of Miralax every day since changing her diet and giving her aloe vera juice didn’t seem to be producing any results. It definitely feels like Camden is making improvement symptomatically. She doesn’t complain as often and it is much less a part of our everyday life. She is still getting ocassional headaches and sometimes complains about her legs hurting after playing or being active but she does seem to have a lot more energy. She hasn’t complained about chest pain in a long time. Her complaints of dizziness and stomach aches is also more infrequent. I forgot to mention that based on what Garrett’s scope reveals may determine whether or not we’ll decide to scope Cami. If it reveals that he does have an eosinophil disorder we’ll probably go ahead with a scope for Camden as well.

Other than a really nasty virus that we had a few weeks ago that hit me, Garrett and Camden the kids have been pretty healthy. The virus hit Garrett the hardest and he was vomitting multiple times a day for a week and lost almost 2 pounds. He also stopped eating and refused formula or pedialyte so I was soooooo thankful that I had resumed nursing him when I did. He also refused any solids or medications. He didn’t want anything in his mouth other than nursing. Over the last few days he has begun accepting the formula again which is good because I can’t seem to keep my supply adequate enough for his hunger. He is getting 1-2 bottles a day. The enzymes have seemed to make a huge difference in his ability to tolerate my breast milk. I have actually gone off of the enzymes for this last week however because in order for the biopsies to reveal any eosinophils that exist he needs to be exposed to the food proteins that irritate him. We’ve been giving him lots of solids this week too and it feels weird to feed him foods that I know will give him rashes such as pears and banana and apples, etc. He is also reactive to a new fruit, peaches.

His sleep has deteriorated quite a bit. His naps are back to 30-45 minutes and sometimes I can get him to go back to sleep when he wakes up, sometimes I can’t. He is groaning again in his sleep and he wants to nurse constantly to alleviate whatever discomfort he is in (when he was doing his best he was going 4-7 hours at night without eating). He doesn’t seem to have diarrhea anymore though so that is good.

My grandma (on my dad’s side) passed away early Tuesday morning so that has been another thing occupying my mind lately. She will be missed and was a wonderful influence on my family but I am very thankful that she no longer has to endure the restrictions and pain that were put on her body. I saw her a few days before she passed and all though she couldn’t speak anymore there were several times where there was a very obvious look of recognition on her face when she saw me and so that brings me comfort.

Development wise Garrett started taking his first steps at the end of 9 months. He walks a little bit every day now but still prefers crawling since he doesn’t have to worry about falling. He is 10 months old now. He also has two more teeth up top with two more on the way, once those two come in he will have 6 teeth. He is a fiery child and screeches and screams to get our attention or to let us know that he doesn’t like something. He definitely has some attitude and isn’t afraid to show it. Camden has become a computer junkie like her parents and constantly wants to be on the computer. We are doing our best to limit her time on the net and to get her to focus on other things. Her favorite thing to play is her Princess Polly Pockets and she likes doing arts and crafts. Her writing is getting so good and she loves to write things if we tell her how to spell them. She knows how to write all of her letters and this morning she spelled mom without any help. She also likes to tell stories and have us write them down for her.

Here are a few recent pictures of the kids…

We took Camden to the shooting range for the first time. This is her decked out with goggles and ear protection. She loved shooting with her dad.

This is a posed shot. When she actually shot the gun for the first time Mike was kneeling behind her and holding the gun with her, she got to pull the trigger all by herself though. Next time you see her ask her about how she got shot in the head with a bullet, it’s pretty funny…

It’s always impossible to get a good posed shot of the two of them together…

This is how much she likes the computer…she fell asleep in the computer chair

Going on a family walk…daddy and Camden rode bikes and we walked behind

He’s going to kill me for this but it’s worth it….

and another one for good measure…

LOL, those are infant sunglasses

Still Trooping On…

I have found it difficult to find the time to update lately. What free time I have had has been spent keeping up with daily chores and also reading “Healing the New Childhood Epidemics: Autism, ADHD, Asthma and Allergies” by Kenneth Bock, M.D. and Cameron Stauth. It is an amazing book that probably all parents should have but especially if your children have one of the items mentioned. I am 2/3 into the book and it’s been very, very informative.

In regards to Camden and Garrett they are yo-yoing back and forth with their health. As mentioned in my previous post Camden was switched to another version of amoxicillan on May 21st for an unresponsive double ear infection. On Sunday, May 24th, we took Garrett to the after hours clinic to find that he too had a double ear infection to go with his 102 fever. He was put on regular amoxicillan. On Tue, May 26th, we met with Anne Welsh for the first time. She took a look at their ears and both of them looked awful. Very red with lots of pus. Garrett’s antibiotic was also switched to the amox+

We talked about Camden’s test results and Garrett’s issues too. She was very thorough and was willing to answer all of my questions even though the front desk had made a mistake by only scheduling us 10 minutes to meet with her. That is my biggest beef with doctors but oh well, at least she was willing to break protocol. I forsee our biggest point of contention will be how pro-vaccine she is. She wants to consult with our allergist to figure out the best way to get Garrett vaccinated (since he has so many allergies). I did not feel like getting off on the wrong foot so I decided I’d bring up my vaccine stance at a later date, I didn’t want to spend the whole appointment debating vaccines.

For that following week Camden had various complaints of stomach aches, joint pain and headaches and even said her “eye closers (eyelids) hurt”. I considered bringing her in for her ears hurting again that weekend of the 30/31st but decided to give her some garlic oil drops instead. They seemed to help almost immediately. I also gave Garrett some. On the 30th we also began giving Camden Mirilax for constipation. Camden completed her dose of antibitoics on May 31st. The next day on June 1st she developed a low grade fever of 99.6 (her normal temp is 97.6). She had another low grade fever the next day so we decided to take her in to make sure she was not developing an ear infection again. I had Dr. Welsh look at Garrett and Camden’s ears and she said they both looked fantastic. She was not expecting to see such an improvement in their ears in that short of a time period and I attribute the quick success (especially with Garrett who was only midway through the antibiotic) to the garlic oil drops. Camden did have a tummy ache that day and interestingly enough Dr. Welsh could “palpate” stool in Camdens colon. It feels like a “hot dog” when you push on the lower left side of her stomach. Dr. Welsh said that she very rarely sees that and thought it may be due to how skinny Camden is. I am a bit worried about being able to feel that lump. I guess we’ll just see what happens over time.

Anyway, it felt like we were finally getting to a calm spot with Camden’s health and she had a few good days or at least days with minor complaints until this last weekend. On Saturday she woke up with a headache and stomach ache and felt “wobbly” which is her term for being dizzy. I gave her some ibuprofen since she was going to the Highland Games in Ferndale with her dad for the day. That helped but by late evening she was feeling bad again. Sunday she did pretty good and had only minor complaints. Today, Monday, her legs hurt again and she also started having ear pain AGAIN! She also said her eye hurt and sure enough her left eye is getting pink eye AGAIN! So we did garlic oil drops in both ears (it’s her left ear that hurts) and tonight I’m going to try and put some breast milk in her eyes if she’ll let me (breast milk clears up pink eye…it’s magical). She hates things in her eyes so I’m not sure if she’ll agree. We have an appointment on Wednesday with Dr. Welsh again to redo bloodwork and see how Camden is doing so I guess we’ll be able to check her ears then. Garrett had a bad night last night too so I gave him some ear drops today as well.

As far as Garrett goes he seems to be doing okay. I have discovered that he is definitely allergic to pears all though the reaction is fairly minor. He also developed a new allergy to cucumbers of all things. They are in the same food family as some of the other gourds that he is allergic to. The good news is that he seems to be tolerating freeze dried blueberries, mangosteen and strawberries which are all from Trader Joes. I’d give him the fresh kind but he still has texture issues and gags on the food. The freeze dried fruit is nice because it is “crunchy” and it dissolves in his mouth and then I also don’t have to worry about him choking on the skin of the fruit. He is also eating Rice Chex. He is such a happy baby when he is eating. I hope we don’t lose any of these foods because he is just so happy to eat. I am a bit worried about rice because he does seem to get hives when he eats a bunch of it.

On May 29th I also started taking digestive enzymes to help break down the food proteins in my breast milk so that I could reintroduce Garrett to breast milk. My supply was almost completely gone and my body was no longer cooperating with pumping. It was either reintroduce him to breast milk or lose my supply altogether. I am so happy to report that the enzymes are seeming to help him tolerate the breast milk. He has not had any increase in pain or sleep disturbances since he has been back on breastmilk. The only changes is that his stool did turn a bit greener than it was before. The weirdest change is that his pee “stinks” again. It had done this prior to me removing breastmilk from his diet and I was never able to find out why. I am going to ask them to do a urine sample on Wednesday. Other than last night he is still sleeping fine and napping fine, his reflux has not increased and he has not had any allergic reactions to my milk. Yay! He is still on the elecare because my supply is not big enough anymore but I am working on that. We have an appointment with his allergist tomorrow and I am going to ask them to prescribe prescription based digestive enzymes so that I can give them to him directly (to see if they help him break down the food he eats directly) and also to help with the cost of me taking them (they are expensive).

Medically, that is all I can think of for now. I will write another post on the other blog with just some fun stuff and pictures when I get a chance. Garrett is super close to walking and is starting to sign and wave.

FINALLY some answers

I am so very thankful that we decided to ditch Bunks Medical Center and find a new practice. I was hesitant about posting who are disappointments were with but hey, we might as well help someone else out if they find they are receiving the same caliber (lack thereof) of care. We have been added as patients to Dr. Anne Welsh and another doctor (her partner – professional kind) Dr. Laurie Emert and they are part of Peace Health Medical Group, both are pediatricians. We met with Dr. Emert today since Dr Welsh was not in the office on Thu/Fri and the intake nurse we spoke with the evening before wanted to get us in right away. The intake nurse was rather mortified of how my daughters symptoms were being handled. At least I was not the only one!

I spent the evening before our appointment drawing out a document highlighting Camden’s current illness, her symptoms while not sick with an acute illness and her history for the last several months. You can see the document HERE.

The appointment was wonderful and refreshing. The nurse we saw was nice and friendly and brief (things we like). We literally only waited a few minutes between being brought in the room and having the doctor come in. I can’t tell you how much I loved this. Normally we wait for a 15-30 minutes at the previous practice before the doctor ever showed up. Hard when you’re in a tiny room with two kids and little to do except for shred the paper and avoid constant concussions with corners and drawers that pull open with a monkey baby. Anyway, Dr. Emert came in and she was warm and caring and truly appeared to care about what was going on. She sat forward and listened, asked probing questions, made good direct contact with Camden, gave her a thorough exam…all things you’d expect and hope from a doctor. She was impressed with the document I wrote up and was not expecting that. She was happy to have it so that she could collaborate with Dr. Welsh over Camden’s case. She took my concerns over cancer seriously but was very reassuring that there were many other diagnoses that fit much better than cancer and that she was not concerned about this, at this point. I love that she is a mom (she has twins and also at least one more child…I can’t remember now) and that so is Dr. Welsh which is why they split their time and work together so that one of them is always in the office. She let me know that they always called with lab results if something was abnormal the same day, even if it was the evening or weekend. She also was reassuring in that they would not pass of these symptoms even if we didn’t get an answer from the first set of tests. She said that they would have us keep coming in until we had answers. She appreciated and believed me when I told her that: A. Modern medicine is not my first method of choice and so if I am coming in it is because I have exhausted other options and I am concerned with her symptoms enough not to let them go on their own any longer and that B. for the first 4 years of my daughters life she’d never had an antibiotic and been to the Dr once for an illness. C. We prefer to work with a naturopath and approach illness as naturally as possible but are always open to more interventive care as needed. She was very positive and affirming of our choices and it also helped for her to understand my view on the symptoms and their seriousness. I also loved that she knew who our naturopath was (Dr. Mark Steinberg) and that she thought he was a great naturopath. She even complimented his lab choices when I showed her what blood work he wanted done, she added a few more to the lab request but she agreed with what he had ordered as well. Anyway, without me having to ask for ANYTHING, she wanted to see a blood draw, a urine sample and urine culture and an x-ray. Again, these are not my first lines of defense but I was so happy to have someone who saw her symptoms as a serious demand for “action” instead of passing the buck and waiting for the children’s hospital to look into it. What was also nice is that ALL of the departments were in the same buidling. They have an imaging department, lab and pharmacy right in the same building (as well as an after hours clinic, a cafe, etc).

We took a urine sample during our appointment and she read it while we waited in the office and gave us the results herself. Everything from the urine sample looked good and their was no indication of liver problems, UTI, etc. She wanted to culture the urine to rule anything else out and said we’d have the results on that as soon as she knew.

Do you want to know what infuriates me? After listening to me describe Camden’s current symptoms and the fact that she still had a fever and ear pain despite being on Zithromax she became CONCERNED and checked Camdens ears. Know what she found? That the antibiotic she was on (Zithromax) wasn’t working! That was what I thought and was exactly the reason I wanted her to be seen the day before by Bunks but they totally blew me off. Since Camden was on amoxicillan 2 months before in March she decided to put her on a “souped” up version for this infection, which was only progressing. Camden is still experiencing hearing loss and so we definitely want to make sure not to let this go. I am still livid from the fact that if I wouldn’t have changed doctors she would have gone on without the right treatment until I made them see her again. We made a plan to get the x-ray and bloodwork drawn the same day and that we’d meet with Dr. Welsh the following week when she was in the office. So we have an appointment to meet her on Tuesday.

We went across the hall to imaging and Cami did her x-ray. We decided to wait and do the blood draw later that evening when Mike got home from work so that I could hold her. We then went and filled her prescription for the amoxicillan and passed the time in their cafe. Cami got a chocolate milk which she was so EXCITED about. I’ve never let her get a commercial chocolate milk before…lol. She couldn’t finish it though or eat any of the quesadilla because it all “hurt” her stomach. She hasn’t really been eating for the last several days except for a few bites of things here and there.

After that we headed home for about an hour and then took Garrett to the allergist. We were pleased to find out that we could still do the skin prick testing even though he had broken out in hives all over his body the day before. We’re not sure what he reacted to (again he was not fed anything and I didn’t see him eat anything) but we were very thankful that the hives never progressed into anaphylaxis. He actually slept through the entire episode and so I never had to give him Benadryl for it. We did the skin prick testing and he came up positive for wheat and peanut. Both foods I’d seen him react to (wheat directly through cheerios and a pretzel he sucked on a few months ago) and peanut through me having some peanut products in March. This time the wheat allergy was a very strong positive whereas on the RAST it was so low that they didn’t typically recommend people with that level actually avoid wheat even though I insisted that we would since I had seen him react to it. So now, he is truly IgE allergic to: dairy (including goats milk and casein), egg, wheat, and peanut which also means we avoid tree nut and I know from observation that he is allergic to macadamia nuts and possibly cashews. Anyway, it doesn’t rule out an allergy to the other foods we’ve seen but we’re not at a point where we want to do patch testing on those yet. Dr. Elkayam (our allergist) also was pleased with out new pediatrician choice and said that she was very close in second to his number one choice of a pediatrician and was very pleased we’d be seeing Dr. Welsh. I informed of the trouble we are starting to have with Elecare and with prevacid not working anymore and he offered some other formulas we might try and reaffirmed my fears that the reason prevacid probably wasn’t working anymore was because he has Eosinophilic Esophagitus. The hallmark of this disorder is that the reflux is not combated with trials of PPI’s (proton pump inhibitors). Often they see short term improvement only to find that after a few weeks the reflux returns. He wants us to call within a week to report on how he is doing and then determine when we’ll come in from there.

We got home from that appointment at 4:30 and so it was a long day of medical appointments. We were at doctor appointments from 11am until 4:30pm with only an hour break at home. Mike got there shortly thereafter and then we took Camden back to Peace Health for the lab work. As we were heading out the door Dr. Emert called and let us know that she had looked at the x-ray and that Camden had A LOT of stool in her colon and that she was very constipated and that she believed this was the source of her stomach pain. I told her how Camden poops every day and doesn’t strain or seem to have any problem passing her bowel movements and she confirmed that you can still have constipation despite this. She said we could do prune juice and flax seed oil until Tuesday and then on Tuesday they’d go over everything with us and give us a full regimen of what we could do to clear out all the old stool. I was so happy that she called me directly to talk about the results and didn’t send a nurse to do it. I did ask her if she felt that the constipation was related to the joint/musle pain issues and she said no but that she wouldn’t know for sure until she saw her blood work. After the phone call we headed to the lab.

I am still in awe at how well she did getting her blood drawn. A month ago when she had it drawn she literally screamed at the top of her lungs in fear. She had tried to be brave but wasn’t able to willingly give us her arm and so after 20 minutes of coaxing we had to have another nurse hold her arm down (it was done very lovingly be all involved) but it was very scary for her and she screamed despite herself. She was very embrarrsed afterwards. Anyway, this time she willingly and matter-o-factly gave her arm and then calmly let her blood be drawn without making one single peep. She didn’t cry, didn’t whimper, nothing. I was AMAZED! She looked a few times but mostly kept her head against me.

So that was our day! It was busy but very productive. I am so glad that we have what seem to be some very competent and caring doctors working with us now to get to the roots of Camden’s symptoms.

Now, the reason I am up at 3 in the morning writing this is because Garrett is not doing well again. His reflux has gotten really bad and he is waking every few minutes or so again coughing (because of the reflux) and moaning in pain. I think I am going to try a different formula tomorrow to see if it reduces the reflux since Garrett is also showing other signs of intolerance to this formula (he is constantly itching his face and this began after this formula).

Whirlwind

The last two days have been crazy. Tuesday Camden woke up with extreme abdominal pain and I was a blubbery mess. It was the first time she cried in pain while being sick. She was doubled over from the stomach pain. I gave her tylenol and ibuprofen and within an hour or so she was better. Her ears were also hurting her tremendously. We went back to the doctor and Camden was put on zithromax for her ear infection. We saw a new doctor, Dr. Hopper and he seemed great. He did a good job of feeling her abdomen and looking over her and assured me that her abdominal pain was not acute in nature and that he believed that it stemmed from her joint/muscle pain. I accepted this and we took the prescription for Zithromax. I also had him check Garrett’s ears to make sure they were not infected. They weren’t. She got worse again in the evening and we weren’t able to finish our errands because she was in too much pain.

Today, Wednesday, was another twilight zone day. I should just get a new alarm clock and have that be my theme song to wake up to. Camden limped into my room this morning crying and laid on the bed. I motioned for her to come over and snuggle and instead she colapsed on the bed and said, “I hurt so bad, I just can’t move. It hurts to move mommy. My stomach hurts so bad.” I began asking her questions with her facing the other way and she wouldn’t respond. I thought she was just ignoring me. I started saying her name and she didn’t budge. I shouted her name VERY loud and she didn’t budge. I realized she couldn’t hear me. I walked around to her face and asked if she wanted to watch cartoons and she said yes. I had to carry her to the couch because she hurt too much to walk. I gave her the morning dose of ibuprofen and tylenol and put her on the couch. To test my theory I sat behind her in the office chair and talked to her with absolutely no response. I tried changing what I was saying in case she just found the TV more interesting. I offered her the best thing in the world (in her mind) and asked her if she wanted ice-cream for breakfast and she didn’t budge or make a peep. I asked if she wanted to get on a plane and go to Disneyland today, nothing. I talked louder, no response. I started saying just her name louder each time with no response. I changed the pitch. Nothing. I went in front of her and then she would look at me. I realized that she could hear at least partially out of her right ear (which was laying on a pillow) so that if she could see me talking she could make out enough of what I was saying. She also finally asked me to turn up the TV because she couldn’t hear it.

I called the Doctor and let the nurse know in no uncertain terms that I needed to speak with the doctor. I let her know that Camden couldn’t hear and wanted to know if there was anything we needed to do to prevent long term hearing loss (as in drain the ear or something) I also told her that Camden was in unbearable stomach pain when her pain meds wore off even after 2 doses of zithromax and that she needed to be evaluated for her stomach pain. This was at 8 am, right when they opened.

To spice things up a bit at 10:20 am Garrett decided to break out in hives all over his body again. At first there was just one or two but then they quickly spread. Interestingly they seemed to develop in conjunction with him taking his bottle of Elecare. I called the allergist because I was unsure of what my steps should be since he wasn’t displaying any trouble breathing and no puking, etc. I also was worried because we were scheduled for prick testing the next day and they can not do the testing if the person has had antihistamines. Thankfully she said we didn’t need to give the Epi unless he developed respiratory distress  – he never did. WHEW! He atually slept through the whole ordeal.

At eleven am (3 HOURS LATER) the doctors office finally called me back and it was the nurse who called, not the doctor like I had asked for. She informed me that we didn’t need to worry about Camden’s ears (good) and that the doctor wanted me to skip Camden’s next dose of pain meds and see if she still had a fever. I told the nurse that of course she still had a fever I had felt one last night but complied. The nurse admitted that the doctor’s problem was that Camden didn’t appear to be in much pain while she was in the office. Um, yes…I KNOW. That is because she is taking ibuprofen and tylenol around the clock. I’m just making it up to amuse myself. Grr. I told her it would be around 2 when I’d be able to take her temp since her last dose was at 8 and her fever usually didn’t return until the six hour mark all though her symptoms (pain) occured around the 4 hour mark after taking meds. Sure enough by 2 o’clock I took her temperature and she was 103.5. I called the office back and was told that she’d let the doctor know and he’d get right back to me. The kids had both fallen asleep in the car after our appointment with the insurance company (like any good paranoid mom I decided to take out a life insurance policy for myself incase something happened to me). I drove around town expecting their call to come in or to be sent somewhere for an ultrasound or SOMETHING. No call. Finally at 3:45 I called the office back and expressed again my concern and that I wanted to speak with the doctor and that she needed to be seen. Well, we didn’t get a call back until 4:40pm and it was only the nurse that called me back and do you know what she said? “The doctor wants you to monitor Camden’s symptoms tonight and then see Dr. Elkayam (the allergist) first thing tomorrow.”

UHHHH. Say what?? Excuse me? First of all what do you think we have been doing for the last 4 months? All I do is monitor her symptoms. Geesh. In addition, her symptoms have NOTHING to do with the allergist! That is my SON seeing the allergist tomorrow, not Camden. The nurse didn’t know what to say to that. She then said, “I would suggest then that you go to our after hours clinic.” Uh huh, I bet. The last time we went there as suggested we sat there for FOUR hours to be seen and you know what they did? They told us to take Garrett to the ER. I was so mad.

We wound up calling our old doctor that our insurance doesn’t cover and he called us back (directly, I might add) within 30 minutes of calling his nurse. We talked for a half hour and he said as long as it wasn’t appendicitis (which it doesn’t sound like) it could wait until morning but that we needed to have her checked out. He was adament to take her to the ER if anything changed and it appeared it was appendecitis. I had my appendix out last year.

We also switched doctors and we are seeing a new pediatrician in another practice tomorrow. We’ll see how it goes. I am all ready more impressed with this practice based on my exchange with the Triage nurse who was appalled at what had occurred today. I wrote up a long summary of what’s happened over the last 4 months to bring with us tomorrow. Wish us luck.

One Day At A Time

I have to keep telling myself to do it one day at a time or I start to get overwhelmed.

Camden is still sick and is getting worse. She wasn’t doing too bad this morning and we went into the doctor. As usual, it was pretty pointless. The doctor we saw today was helpful in the fact that he is putting together a report going over Camden’s symptoms to send with us to the hospital. They also asked me to bring in the lab slip from our naturopath and agreed to add all of the things he’d like to see tested to the lab work she needs done, so that is good. If they order it that means insurance will cover it. She needs a blood test, stool test and urine sample done . The stool and urine sample were requested by Seattle Children’s to address the abdominal pain. We had the doctor listen to her lungs as well because she has developed a very mucousy cough. The doctor we saw today did mention that Camden’s ear was a little red and that came barrelling full force tonight when she woke up at 11:30 crying that her ear hurt. Not to be outdone her brother woke up after giving Camden Tylenol only to cry and throw himself about the same way he did when he had an ear infection a few weeks ago. I tried to rock him back to sleep but he just kept throwing himself around in my arms and moaning. In defeat because at this point I have no idea what else to do but medicate the pain, I gave him Tylenol too. Luckily, he has been sleeping since then. The last two nights he has started moaning again in his sleep the way he used to do when he was nursing and being exposed to stuff he was allergic to. I don’t know if he is moaning because of allergies or because his ear infection is  back.

I layed with Camden for a few hours and got a picture for how poor her sleep is. She was constantly moving trying to get comfortable. Some nights she comes into our room saying that, “I can’t get comfortable, can I sleep with you?” and we usually try to coax her back to her own bed because she is a bed hog and likes to put her feet in our faces. We also thought it was just an excuse. After watching her contort her body all over the bed in her sleep I see that she really isn’t comfortable. She kept putting her legs at weird angles and I asked her (she was half asleep) why she was putting her legs everywhere and she said because they hurt. At one point I was rubbing her back and tummy (both hurt) and singing her, her favorite lullaby (Hush little Cami) and my voice kept breaking. I feel more vulnerable and fragile as each day passes and I know that it’s not good. I know I need to toughen up because really, breaking down doesn’t do them or me any good. I think part of the problem is that I’ve tried to bare this all instead of giving it to God and I’m learning I just need to turn it to Him in faith and just do my best to love them and advocate for them. It’s not my job to heal them, it’s my job to be an instrument for them. I also need to figure out how to do away with the guilt. I know there is no need for me to feel guilty but I feel a tremendous amount of guilt for not having the answer and for not being able to “fix” it.

I worry that whatever the kids (and now I) are experiencing that it may be environmental and possibly due to mold or some other hidden factor. It seems odd that all of this cropped up after our move here to Bellingham. I called a local company here called Mold Busters to see what our options are for having the apartment looked at for mold contamination and what tests are reliable for testing people for toxic mold exposure. I also called Garrett’s allergist and they do have a skin prick test for mold but I’m not sure how reliable that would be.

I am hoping we can avoid antibiotics for Camden’s new ear infection. We have always just done garlic oil in the ears for ear infections except for the last ear infection we had we weren’t able to clear it with garlic oil and we wound up on antibiotics. I tried to give her garlic oil tonight but she wouldn’t let me near her with it. If anyone knows any other simple ways to clear an ear infection let me know. I have a dozen books that spell out what to do but sometimes it’s easier to just hear what works from another parent.

I am now experiencing some sort of weird abdominal/pelvic pain. It started Friday night and hasn’t gone away. It is a heavy/full feeling in my pelvis that feels like a lot of pressure. It is a dull ache, not sharp and it used to be unnoticeable when I was sitting and I could only feel it when I was standing or walking but I am sometimes able to feel it now when I’m sitting. I also realized tonight that I am very bloated, so much so that I look 4 months pregnant. I went into the doctor for me today too and had an exam and blood test. I am not pregnant, which I didn’t think I was anyway. I am scheduled for an u/s on Friday to check and see if it is an ovarian cyst. I had one of those back in 99 that ruptured. I had my appendix out last year. Earlier today I was not able to palpate the pain (in other words I couldn’t push on my stomach and cause anything to hurt). However, in just feeling my stomach there is now discomfort high up in my stomach under my ribs that radiates all the way down. It is not a severe pain or anything like that. I am wondering if it is stress or diet related. I’d be fooling myself to say I haven’t been under a lot of stress. I feel like I’m handling it very well though.

Anyway, please keep me in your thoughts and prayers as well as the kids.

Camden has a fever

This is going to be a quick post because it is late and I really should be sleeping.

Camden came down with a fever this morning. It has been between 101-102. I think it is higher tonight but I don’t want to wake her and we lost our ear thermometer so we just take it orally or under the arm. I was really hopeful after keeping her fever free for a month that she was on the mend illness wise but here we are again. She only made it one month without a fever. She is saying her throat and tongue hurt as well. The tongue is a new one for me, lol. I am assuming she is just feeling the residual pain from her throat radiating to her tongue.

The ongoing illness/pain/lethargy is really messing with my head. I had promised myself a few weeks ago that I would not, under any circumstances, google about childhood cancer. I made that mistake tonight and I must admit I am thoroughly freaked out. I just keep telling myself that her CBC and differential were fairly normal so she shouldn’t have that. Then it makes me wonder if she would be within the 10% of children who have normal CBC’s at diagnosis.

Anyway, I’m sure there’s no reason to worry about that but reading the symptoms of Leukemia was a true breath holding experience for me. Talk about a worse nightmare scenario. Ok, off to dream wonderful happy thoughts.

Hopefully, I wont jinx this but Garrett has been sleeping for 3-4 hour stretches at night. Whoop! Whoop!

Garrett’s First Ambulance Ride

I swear my children are silently competing with one another to see who can give me my first anxiety attack.

Camden had a doctor’s appointment today with our primary care physician because I want to go over any other possible causes for her pain and rule out any other diseases/infections/etc that could be causing this since our consult with the GI is still six weeks away. If she turns out not to have EGID then we will have wasted a few months with her being in pain and still no diagnosis. Someone on Mothering (a forum I frequent) suggested maybe she had Lyme so I wanted to find out about testing her for that.

I had my sister-in-law come with me to the appointment so that her and Camden could play in the waiting room during the appointment because I don’t want Camden to overhear us talking about her health. I don’t want it to get into her head that she is “sick”. I know that the mind and body are very connected. I am so thankful that Melanie was there today. Right when we got to the office and were in the waiting room we were working on submitting the insurance info and I was holding Garrett. He began coughing like he had choked on his saliva or something. I tried to ignore it and hoped he wasn’t coming down with something. He kept coughing and then sneezed a bunch of snot. I found that weird because he hadn’t been sick. Then I noticed that up above his ear he had some hives. I wondered what he had touched. As I was waiting for my insurance cards back I looked back at him and the hives had just multiplied. His face was beginning to be covered in them. I started to get worried. I remembered from our last allergy appointment that his doctor had said if he became covered in hives again and had any trouble breathing I was to give him his Epi pen right away.

At this time the nurse came out and called us to come back to the exam room. She weighed Camden and took her temperature. Garrett kept coughing and coughing and his hives continued to spread and get angrier. He began to rub his face and itch the back of his head. For some reason when he has a reaction his stork bite birthmark becomes itchy. At this point I asked the nurse if Camden could go back out to the waiting room and we’d just bring her in if the doctor needed to examine her. She agreed. At this point I was getting VERY nervous about Garrett. When I handed Camden off to Melanie I mentioned that if Garrett got worse could she please take Camden to my other sister-in-law’s house. When we went back to the exam room Garrett wasn’t doing very well. He was very itchy and was crying  and coughing even more. I had some Children’s Zyrtec in the diaper bag and I gave him a dose of that to hold him over while I called the allergist. In my heart I knew I was supposed to give him the Epi pen at this point but I was hoping I was wrong. I told the nurse that answered the phone at the allergist the situation and his name and she quickly pulled his file and told me, “Give him the Epi Pen right now and call 911!” That was all it took to break down my wall and I began sobbing.

I ran into the hall and asked for help. It had just been Garrett and I in the room waiting for the doctor to come in. I told the nurse that I had to give him an Epi pen and I asked for help administering it. She ran and grabbed a doctor and he went and got our doctor out of another exam room. She listened to Garrett’s lungs and he was beginning to wheeze. The nurse and I secured Garrett onto the exam bed and she swabbed his thigh with alcohol and then jabbed the Epi Pen into his leg. It took a fraction of a second for him to register what had happened but then he began crying. The worst part was that it had to stay in his leg for 10 seconds so that all of the epinephrine could make it into him. I picked him back up and tried to stay in control of my emotions. I needed to call Mike and tell him what was going on.  I found my cell phone and called him. I was able to get out that we were going to the hospital because Garrett was having an anaphylactic reaction and that the ambulance was on the way but then Garrett started throwing up all over me and I had to get off the phone. Garrett was really distressed and he kept throwing up over and over all over me. Like a true mom I held him towards me so he wouldn’t throw up all over the floor.

Within 2 to 3 minutes of the Epi Pen his hives started to go away and he began to calm down. That is when the paramedics arrived. They made Garrett and I sit on a stretcher together. Thankfully they never asked me to let go of him, he sat on my lap the whole time. They took his stats and he was fully recovered and stable by that point. Our ambulance ride was without the siren and lights, thank goodness (all though the siren was on when they arrived). He was a bit nervous in the ambulance but still gave a few smiles for the nice men that helped us. We got to the ER and all of the nurses ooh’d and ahh’d at Garrett and he gave them his flirty little smiles. They taped a little monitor to his toe that measured his heartrate and his oxygen level. His heartrate was typically in the 140′s and his oxygen level was at 100% by the time we got there. He did great all though he started acting behaviorally weird, he was very wired and wanted to get down and when we sat him on the hospital bed he was a little crazy. He was probably reacting to the epinephrine or the Zyrtec (Zyrtec tends to make him hyper).

We were never able to get an answer from the ER on what they thought he reacted to. One of the ER doctors told us that it may just be his eosinophils reacting because he may have had so many build up that they just kind of reached a threshold and then he reacted. I have no idea. The hardest part of all of this is not knowing what he reacted so strongly to.

They sent us home with a prescription of prednisone (a steroid) that he is to take for the next 3 days to help keep his body from reacting again. When you have anaphylaxis you can have rebound reactions once the original dose of epinephrine wears off (this is why you ALWAYS have to go to the ER after administering an Epi). He is also to take Zyrtec and Benadryl once a day along with his prevacid solutabs for reflux. Mike commented that, “for a hippie baby he sure takes a lot of drugs.” No kidding. Don’t remind me.

Tomorrow we have an appointment with our naturopath who is also a DAN! doctor (Defeat Autism Now) and I am hoping he’ll have some helpful advice/suggestions for us in regards to Camden. I think the only thing we can do for Garrett at this point is keep him in a bubble. I swear he is allergic to breathing.

Need I remind you that almost a month ago exactly he went to the ER as well (for being sick). He last went on April 12th and it is only May 13th. Please, no more ER visits Garrett.

Oh yeah, the most priceless moment today. Mike got pulled over on his way to the hospital for driving like a mad man from Mt Vernon up to Bellingham (a 40 minute drive). The officer was nice and didn’t give him a wreckless driving ticket, just a speeding one.

Grumpy Garrett today – notice the permanent rash he has developed on the side of his mouth for the last two weeks. He also developed a permanent rash on his chin yesterday too.

Garrett says, “FEED ME!”

For fun…

Garrett dressed up in his Sunday best on Mother’s Day

Quit taking pictures mom!

Appointment – 2nd Food Trial – Internal Doubt

We were FINALLY able to get our appointment set at Seattle Childrens. Apparently they are the busiest they have ever been and have been getting a lot of referrals. It took us 2 weeks to get our appointment and it was starting to drive me crazy. Even more annoying is that our appointment is not until June 19th. That is six weeks away! We placed ourselves on the cancellation list and I’m going to find out if there is anything I can do to get them seen sooner but I kind of doubt it.

Today was hard for me mentally. The honeymoon period with Garrett on the Elecare seems to be wearing out. He has starting spitting up and refluxing a lot and yesterday when he spit up he was very distraught and cried/screamed for a long time afterwards. I had to give him some water to rinse his mouth out with. He also still has some trouble sleeping, granted he is doing much better. He seems to not be able to sleep well unless he is in the hammock. It makes me thankful we have a hammock for him but at the same time makes me realize he does have reflux issues. This seems to have developed since starting the formula. Either that or he’s always had it (thus the night waking) and the formula is just making it more obvious. I guess logically the second scenario seems to fit more. He’s been on the Elecare for 3 weeks and his poop is still green. It is a different shade of green from when he was nursing, but still green. It always has been. It is thicker and he no longer has diarrhea but it pains him to have a bowel movement (even though it is not formed) and he still gets a red ring around his bum from the poo. I called the doctor today and told them I want a stool sample done. I’m tired of doctors telling me this is nothing. A friend of my parents (with a degree in biochemical engineering) told me that it sounded like he had bile in his stool and it was possible that Garrett isn’t breaking down fat. He was very shocked they had not ordered a stool sample yet.

The newest dilemma I am facing is internal doubt about whether or not I am doing the right thing by having Garrett on this formula. He has improved but he also seems to be regressing in other areas. I just keep wishing I knew exactly what he was reacting to so that I could eliminate it and keep nursing him. In talking with other EGID moms it may make no difference what I eliminate. I did wind up sending an email to a local LLL to see if she could find a leader in the U.S. that is familiar with breastfeeding and EGID. I am also trying to figure out what to do in regards to Garrett and Camden’s diets because in order for them to get accurate diagnosis they have to be somewhat exposed to the things that are causing the problems. In other words if we get the condition under control via elemental formula and/or removing all allergens than the eosinophils will have time to resolve by the time they get scoped and we’ll never know if that was the issue. So, I’m considering letting Cami eat dairy and gluten again until we get this all sorted out. I honestly have not seen any difference yet. She still has dry itchy skin. Still has the allergic shiners. Still has all the joint/muscle pain and headaches, tummyaches, etc.  Today, while I was cutting her nails and holding one of her fingers by the knuckle, she informed me that it hurt. She then proceeded to show me how all of her knuckles hurt. I also let her watch Riverdance for the first time today which she absolutely LOVED. She danced along with them for a few minutes and then had to stop because it made her legs hurt. She also complained about her throat and chest “burning”.

Today I conducted Garrett’s 2nd food trial. It’s actually a solid he’s never had before. Green beans. So far, so good. He was completely thrilled to be eating something, which only made me feel like a mean mommy for not feeding him. He gobbled down the green beans in record time. I will give them to him again tomorrow and see what happens. Cross your fingers for a “safe” food.

I think I was going to mention a few other things but I can’t think of them now.

1st Food Trial – Applesauce

We took an unexpected trip to Lacey this weekend to help sort through Mike’s parents garage. Anyway, I am supposed to be trialing some foods with Garrett and documenting the responses so that it can be included in his case file to Seattle Childrens. On Friday, I gave him about 2 TBSP of applesauce. He gagged through most of the bites but kept wanting more. That was the extent of his reaction.

On Saturday I gave him the second round. Again, about 2 TBSP of applesauce. He didn’t have much trouble with gagging this time but within 3-4 minutes of the first spoonfull while he was still eating he developed hives all around his mouth. Amy (my sister-in-law) took pictures for me so I will post them later. About 10 minutes after the start of feeding him the applesauce and when I was cleaning him up he also started retching like he was going to throw up, all though he didn’t. He also coughed a few times but I don’t think the coughing was related.  The hives lasted for about an hour and then completely faded away. He slept very poorly Saturday night and seemed to have a lot of stomach cramping and gas. He had been sleeping well prior to this.

For the record it was just plain applesauce with no sweeteners and no cinnamon. I keep googling and apparently an allergy to applesauce is very rare.

Ugh.

Oh, and he happened to trial his own food today. His choice? Soy! Camden was eating a strawberry soy yogurt from Trader Joe’s and left it on the floor (only half empty) without me knowing. Jaxon ran into the kitchen saying, “Jessica! Look at what Garrett did!!” I expected to find some misshapen toys and instead found him sitting with a pool of nasty looking stuff between his legs. I thought he’d thrown up. Then I saw he was holding a yogurt container. He was covered in yogurt and so was the floor. No rashes, thank goodness but  soy and  strawberry were definitely not on my list of trial foods. I am just very, very thankful that it was not dairy yogurt which could have sent him into anaphylaxis.

Another update is that Garrett is now on 100% Elecare and no longer needs any rice milk mixed into it. He is also increasing the amount of formula he will take in at one time. He is up to 6 ounces which is great. I am supposed to get 45 ounces a day into him and he’s only been doing 28-35 ounces so here’s hoping it will keep going up.

Editing to Add Pictures:

Applesauce Reaction at 5 minutes from first bite

Applesauce reaction at 10 minutes

Switching Garrett to Elecare

It has been 12 days since I have nursed Garrett and it is still really hard for me to deal with.
On Wednesday, April 8th, I tried giving Garrett some goats milk formula in hopes that it would help him sleep and to also figure out if it was indeed my breast milk that was causing him pain. He took a sip and batted the bottle away. I tried again. He took another sip and very decisively batted the bottle away. I tried a few more times and he would just bite the nipple or grab the bottle from me and shake it. I realized it was a lost cause. Within a matter of moments I saw the first few hives appear around his mouth (this happens a lot) and I sighed. One more thing he was allergic to. But then the situation began deteriorating. He began rubbing at his eyes and then they began to swell. Within a few more minutes he was covered in hives all over his body. I found the Benadryl that we keep in the house for Camden and used some on Garrett even though it was expired. He immediately fell asleep and snored the loudest snore I had ever heard come from a baby. It was a very long and nerve wracking night. There were a few moments where I considered administering Camden’s Epi Pen to him.

The next day I called our allergist and set up an appointment and also requested an Epi Pen which they filled the same day. I also immediately cut all the top 8 foods out of my diet plus other foods I’d seen him react to. I had all ready eliminated most of them anyway but I began strictly observing the diet.

That next Monday on April 13th we met with Garrett’s allergist and discussed all of the allergies I had observed developing in him over the last 4 months since we had last been in their office. They were very concerned with the course his allergies were taking and wanted to do a RAST. They also wanted me to stop nursing him and put him on an elemental formula. An elemental formula is a special formula that contains no food proteins (even vegetables and fruit contain proteins) and is made up of amino acids. It is hypo-allergenic. It is different from formula’s like Alimentum and Nutramigen which still contain some food proteins. They also wanted me to remove all solid foods for the time being. They did say that if I could find all of the allergens that he was reacting to and remove them from my diet that I could continue to nurse however they didn’t recommend it since he was very quickly still developing allergies upon continued exposure to foods. A follow-up appointment was set for two weeks.

My heart was heavy. Up until this point I had kept trying to adjust my diet. I worried about continuing to nurse him and if by doing so he would just keep developing allergies to all of the food proteins he was exposed to. I decided to give my elimination diet some time to see if he improved. He didn’t. He kept getting worse. Before the goat milk incidence his sleep habits were definitely not good. He was sleeping , on average, for 20-45 minutes at a time with one long stretch in the middle of the night lasting an hour and a half or so. It made putting Camden to bed difficult. I felt so bad for how many times we would be sitting reading a story before bed together only to be interrupted. He wouldn’t let Mike comfort him, only me. After the goat milk incident, however, things got much worse. He was waking every 5-10 minutes and it got to the point where I could not lay him down at all. But even on me he would continue to wake and cry, throwing his body around and moaning and groaning.

After a particularly draining night and feeling completely inadequate in helping my son I called around trying to find a can of this elemental formula called Elecare. I discovered that it cost $45-55 a can. I called doctors offices and OBGYN’s looking to see if anyone had a sample they could provide me with so that we did not have to fork out that much money for something that he may not take. No one seemed to even know what it was let alone have any for me to try. I was particularly annoyed that the allergist did not have any. I finally had the bright idea to call the Childbirth Center at our local hospital and a lovely nurse offered us a can to try.

When I got home I opened the can and mixed up a 2 ounce portion of the formula. It smelled NASTY. By nasty I mean it was one of the most putrid things I have ever smelled and I couldn’t believe poor babies and children actually had to drink this stuff.  I tried mixing it 50%/50% with expressed breast milk. Garrett just cried with big crocodile tears. I added more breast milk. More tears. I googled around for awhile trying to figure out how anyone got their older breastfed babies to willingly drink this stuff. I found one suggestion to add pure maple syrup to sweeten it like breastmilk so I tried that. He wasn’t having it. I tried having Mike feed it to him. That was a complete failure too. I gave up for the day and nursed him instead. We continued with the non-sleep rendevous. This went on for several days and I was not able to find a solution. Pumping enough milk to neutralize the taste of the formula was virtually impossible because he was utilizing all of my milk and I could only pump 1-2 ounces.

Finally one night I stumbled across a post from another mom who had success mixing rice milk with the formula since rice milk is sweet like breastmilk. We just happened to have a lot of rice milk in our house since Camden and I were dairy free. The next day, April 20th, I mixed him a bottle of 80% rice milk and 20% formula. To my dismay, he took it without a problem.

It was at that point that I was at a cross road. On the one hand I did not want to stop nursing. I knew that breastfeeding was “best”. Anyone who knows me knows how important breastfeeding is to me. Heck, I was the one who threw my daughter a weaning party complete with a cake in the shape of breasts. You have to be pretty dedicated to go that far, or choose your own adjective.

It is now a week and a half later so it is hard for me to put into words how very hard those first few days were for me. I went through MANY different emotions. Garrett took the weaning process amazingly well. During the day he took the bottle like a champ but nighttime was hard for both of us. I was not used to the physical act of getting up and warming a bottle. As a breastfeeding, co-sleeping mom I was blessed with the luxury of not having to fully awaken to feed my baby. Garrett had a hard time adjusting to waiting for the bottle to get warm. He did not want it cold and so warming it was necessary. It took us a few days but we found a rhythm and it seems to work out okay. I just prep the bottle ahead of time so that they’re ready and I nuzzle him under my neck so that he can half sleep while it warms. He still whines quite a bit while he waits but it’s getting better.

Was it worth it? At this point, yes. The only reason this blog is even in existance is because Garrett has begun sleeping again. In fact, Garrett went to bed around 8:30 tonight and has only woken once for a bottle and it is 1:24 in the morning. In this house, that is BIG. Huge. Thrilling. He has begun sleeping in 3 hour stretches. He has even had 3 hour naps! It is a huge contrast and he has only been on the formula for less than 2 weeks. I’m sure he would sleep even longer if I could figure out how to get him to eat bigger meals. He usually only takes 3-4 ounces at a time. Part of this may be related to the fact that he is still on a nursing type schedule or it may be related to EGID since sometimes EGID kids feel full sooner than they should. The diarrhea he has also suffered from since birth has gone away. His poop is still green and still seems somewhat acidic but at least it is no longer watery. I am waiting to see if it contines to improve over time. I also tried nursing him again 2 nights ago to see what would happen. I nursed him while he was half-asleep so that he wouldn’t realize what was going on. After nursing he moaned for the rest of the night. This is very frustrating since I am still excluding all of the main allergens and have been for 3 weeks now.

My long term goal is to figure out all of his allergy triggers and as long as I am able to eat a nutritionally complete diet, to adhere to his restrictions and nurse him again. I want him to have the many benefits of breast milk without any of the pain it has caused. Right now I am pumping and donating my milk to a local mom who has trouble with her supply for little guy. It feels good to know that the milk is not going to waste. It would not do any good to save the milk for Garrett because whatever I am eating that is hurting him now will likely still hurt him later. I am concerned because my supply is quickly going down. It is hard for me to find the time during the day to pump since I can’t do it when Garrett is around. It also takes FOREVER. What is the best herb to increase supply, does anyone know? I am now only pumping about 14-16 oz day.

The hardest part about weaning Garrett from my selfish standpoint is losing his smell. I loved Garrett’s smell. Every time I held him I would gather in his sweet little smell and nuzzle my face against his head. It seems to be the closest I can get to the primal part of being a mother. Losing that was very, very hard for me. I’m still kind of mourning the loss of it. It really does sound weird when you write it all out but I think you may be able to understand better if you started feeding your baby this formula. This nasty vile stuff is now reflected in his sweet little body and he just smells like formula. I am learning to love and bond with the new Garrett smell but it definitely has not been easy. Thank goodness his little smile more than makes up for what he lacks in aroma.

Here’s the little stinker getting a bath today.

This choice has definitely been the hardest, thus far. Every time I warm him up a bottle and put it in his mouth I question whether or not I am doing the “right” thing. Especially when I pick up the can of formula and read the ingredients. Do you know what the first ingredient is? Corn syrup solids! Ugh. Don’t even get me started on corn syrup. At this point I have had to just step back and trust that everything will work out. Right now he is sleeping better than he has since he was 2 months old and he is happy and thriving. He has put on weight again (he had started losing weight) he is less whiny and clingy and is actually crawling off to explore the house on his own. Corn syrup solids aside, that is definitely progress.

Tomorrow will be Garrett’s first day trying the formula at full strength (he is currently 80% formula, 20% rice milk). Wish us luck!