pomelo / 5220 posts
@Jackiedavis87: That's a tough question to answer. I think sometimes I deal with it better than others. I had my son at 34w4d so I think I blame myself that some of his issues could be because he was born early. I've had a lot of guilt about his premature birth (even though it was spontaneous, no known reason, etc.) I think what makes me feel better is that I am being proactive now to do everything I can to help him - and telling myself that is all I can do! Worrying or guilt get me no where. I understand where you are coming from, mom guilt/anxiety/etc are real.
wonderful pear / 26210 posts
Regarding blaming yourself about the delays, I have found that the best things to deal with it are time and also positive reinforcement from professionals. As an example, I recently had a conversation with a feeding therapist about what I perceived as my failure to introduce complex foods. She shut that right down and gave me permission to stop blaming myself. It made a difference, I have to say.
apricot / 409 posts
@bubblegum: thanks for starting this thread!
My son is in EI for physical, occupational and speech. He's 10 months old now but started at around 6 months. We were referred to EI by the NICU due to his extreme prematurity (he was a 25 weeker). Like others, we had our initial meeting with a social (case) worker before being assessed by various therapists and then starting the actual therapy. The case worker develops a plan with you to set goals or milestones for your baby to meet. So far we've been very happy with the EI services.
@eimama: Thank you for the thorough explanation, especially the part about the prenatal history and all the background questions. It makes more sense to me now. I've often wondered how my son's premature birth and long NICU stay will affect his future.
@psw27: Thats a great point you bring up about doing things now to help him, and that its really all you can do. I also dealt with alot of guilt about my sons premature birth even though my docs said it just happened and there was nothing i could have done differently.
@Jackiedavis87: I totally understand where you're coming from with the anxiety and mom guilt. I had to start seeing a therapist about it. Becoming a parent made me alot more anxious in general, just worrying about the overall health of my kids plus my son is very delayed which makes me worry more. I think every parent wants their kid to develop normally but in talking to other parents I find alot of kids have issues. Whether its delays, weight gain, health problems, allergies, etc. issues are alot more common than i realized and most times there is nothing the parent could really be doing differently. Youre doing a great job being proactive and like psw27 mentioned thats really all we can do.
clementine / 955 posts
@psw27: my DS was also pre-term he was a 36 weeker, I had severe pre e, and my blood pressure was getting dangerously high. It's interesting what @eimama: stated about hard pregnancy and labor having an effect. It helps me feel better because I know that I had no control over that.
@looch: I really am trying to think positive, I think what's making it worst is that we're in limbo right now. We know he's delayed but we haven't started any therapy. I'm still waiting on the call back
@tiramisu: I totally relate to how having a child has made me more anxious, I didn't even know I was this capeable of worrying. Your also right that most kids do have issues, and I just need to take this in stride.
I'm feeling a little more positive this evening. I just have to keep telling myself that bring in limbo is what's causeing so much of depression and stress, and I know once therapy starts I will feel better.
pear / 1717 posts
@tiramisu: Of course! I really want parents to have an outlet to come to. Glad I could help
pear / 1717 posts
@Jackiedavis87: Awww I can completely understand where you're coming from but remember...you are doing all that you can and all that a great parent would do in order to get your child the help they need. That's what's important.
clementine / 955 posts
How long did y'all wait for EI to give you the call back? Tommorow will be a week since I called, and the receptionist told me it would either be the end of the week or the beginning of next week for the call back for appt. set up. So should I wait till tommorow or Wednesday if they haven't called? Or should I go ahead and call today? I'm getting really antsy.
pea / 6 posts
I would wait at least another week. I cannot remember for sure if this is a Federal requirement or not, (pretty sure it is though- meaning all states have to abide by this) but in my state, Colorado, once a referral to EI has been made, there is a 45 day window for the evaluation to take place. Once the evaluation has taken place and if a child is found eligible, services must start within 28 days of developing the IFSP. This is all strictly regulated and reported if there is non-compliance. Though it's hard to wait, it sounds like they're still well within the window of allowable time. Also, depending on how your agency operates, they may be on Spring Break! Here in Colorado most EI evals are done by the local school district and many if the EI agencies take Spring Breaks. I would give them 2 weeks and then follow up. Also, for other mamas who may be considering a referral to EI, these timelines are why I so often just tell families to make the call!! Because from the time of making the call, to actually receiving services, it may be at least 2.5 months! Also, again, may be state specific, but if you're given an appointment time, and you call to change or cancel it, then they no longer have to abide by the 45 day deadline. It would be best practice for them to do so but if there aren't any available appointments then you have to wait which then pushes everything out even further. Hang in there mama!
clementine / 955 posts
@eimama: @bubblegum: oh man, I totally thought I responded to these! Sometimes I mentally respond to text, guess that happened here too. Lol. I ended up calling yesterday because I'm the worlds most impatient person lol. Turns out the case worker had been trying to get a Hold of me, but my phone is always in and out of service, and I still haven't recieved any of her messages. Anyways she didn't have his file in front of her but we just discussed his issues, and who she though (an OT) would be good to bring with her. So they're getting thier scheduale sorted and I should have an apt. Time for eval within the week! Oh and in the state of Texas it is 45 days also, so I'm wondering if that isn't federal?
pea / 11 posts
Does anyone have any experience with hypertonia, thumb tucking, gross and motor delay? Concerned about CP...
I'm new to this board, and I'm so scared.
Any info would be very helpful!!
pear / 1718 posts
@Hgr2016: I don't have a lot of info but want to offer you some . It can feel very scary watching your LO fall behind and have no idea what's causing it.
How old is your LO? What does your ped think? Did he or she suggest next steps?
Here's our EI story: My LO had low muscle tone at four months, although she was never officially diagnosed with hypertonia. I also noticed she tucked her thumb a lot as a baby but no one ever mentioned it to me as a symptom of a bigger problem. She has outgrown it now that she's 15 months old. With regular physical therapy, she's starting to take a few steps on her own, and her therapists think she'll be caught up to her peers by fall.
Hugs to you!
pea / 11 posts
@QueensBee: I cannot thank you enough for your response. This is the worst feeling in the world.
Here goes...
My daughter was born at 36 weeks, contracted a staph infection through a fissure in her rectum (we think someone changed her diaper in the nursery and did not wash hands, or wear gloves. Due to that issue, she spent 20 days in the NICU, 18 being given antibiotics IV vencomyacin
To be particular. They had to poke at her often. When we brought her home, she would (and still does freak out) when we stretch her arms to put on a onesie, or pjs.
My concerns:
Initially, I noticed how much she hates to be in a sitting position, in our lap or whatever, she would always push back as if to lay down. She has never liked bouncy seats or swings. Always pushing back. At her 4 month appt, I mentioned it to her General Ped. She assured me she was, "perfect." After that appt, I didn't worry much until I noticed her not using her left arm as often as the right, in which she also tucked her thumb. I also noticed that when I put her in the lillebaby carrier, her hips seemed narrow, and tight. As time passed, and milestones were to occur, she was not reaching them.
Out of nowhere, the morning of her 6 month appt, I made an appt with alliance to start the evaluation Process. After her appt, I looked at her chart online and realized that the Physicians Assistant listed a developmental delay diagnosis after she sat her up: my daughter fell forward, and wasn't able to hold herself up. I had never tried to sit her up the way she was.
She was evaluated and scored a -1.53(need a -1.5 to qualify for early intervention).
I had been concerned for a while, and always had an instinct something was not right. Regarding a diagnosis, I don't have the same awful gut feeling - wishful thinking or intuition?
All
I know is I am terrified for her. I obsess, and always return to the same outcome : my hands are tied, and I am doing all I can.
Pt and OT both said they have seen children work through these things. I asked them to spare my feelings and be very forthright.
Thank you so very much for taking the time to chat with me, and share your experience. It truly is a hope shot for me.
pear / 1717 posts
@Hgr2016: hi mama and welcome!
First I want to commend you on fighting for your babe and trying your best to get an understanding on what's going on. Sometimes as a parent we know something is wrong and others (such as doctors) will assure us things are fine. Deep down we know it is not, so good for you to sticking to your guns.
My DS didn't have upper body gross motor skill problems however had issues with his feet, which lead to his knees turning in slightly and him not using one leg as much as the other in sitting activities because of the strain it caused.
For over a year, one general ped AND a specialist told me all was well and I kept fighting and got him the help he needed.
Just a little peace of mind in knowing you're not alone and you are not alone mama!!
So did they not give you EI? Because you did say she saw a PT and OT right?
I know it's scary but you're working towards getting her all she needs and that makes you a great mama!!!
pea / 11 posts
@bubblegum: Thank you so much for the warm welcome!! Also, for sharing your sons story with me, and being his hero!! There isn't anything quite like a Mothers intuition.
I'm super grateful I found this board. DH is worried sick (although he won't say anything about it) and I find it difficult to speak to him about my feelings with this. First time I've ever felt so alone.
This is the most heart-wrenching, and difficult situation I've ever faced in all my life. I've never felt so powerless over anything - ever.
She did qualify for EI. The qualifying score must be at least -1.5, Hazel scored a -1.53, just qualifying.
Her PT has come for the initial visit, and I spoke with the OT last night to schedule her first appointment (April 21She brought me some
Peace of mind, but man is this tough!!
Again, thank you for your response and for sharing.
clementine / 955 posts
@Hgr2016: Hi! I just wanted to chime in and say welcome, I don't have much experience yet, as we're still waiting for our initial evaluation for EI(may 3rd) I also wa ted to say that you've found a great community here. These are some of the most compassionate and understanding women I've ever had the pleasure of talking with. Your doing a great job and it sounds like you've done everything you can, so never blame yourself. The ladies here have assured me that EI is an amazing program, and that when started early babies make amazing progress, sometimes to the point of surpassing thier peers. I wish I had more to offer you, but like I said I'm still in the waiting phase be sure to check in with us often and let us know how your doing, feeling and how hazel is. We'll be here.
pea / 11 posts
@Jackiedavis87: Thank you so
Much, and I'm so sorry you're going through something as well.
In my short time here, I've found a great deal of support and love, it's quite amazing.
I am excited for early intervention, and both therapists seem great, like they genuinely care.
If you don't mind me asking, why did you contact EI? If that is too
Personal a subject, I completely understand.
Thank you for taking the time to write - the panic and dread are beginning to subside, being replaced with determination, and hope.
apricot / 317 posts
@Hgr2016: Hi! I have experience with hypertonia. My DS2 has quad CP, of the hypertonic type. He also has some internal congenital issues. His CP affects all four limbs, his eyes, and his ability to swallow/speak.
While this sounds scary, and was scary when he was first diagnosed, his neuro told us that frequent, intense therapy was his best chance at gaining as many skills as possible. We dove all in and started with OT, Speech, Feeding, PT, and a child life specialist who provided adapted toys. DS2 is about to be 2 now, and the therapies have been 100% worth it. While he currently still has trouble speaking and swallowing, he now has a working vocabulary of about 10 words that we understand, and has passed a swallow study on everything except thin liquids. I can't believe I'm saying this, too, but he's now walking and trying to climb :). We really believed that he would never climb and would need adaptive equipment to walk - so this is huge!
pea / 11 posts
@tlynne: Thank you so so so so so so much for sharing this with me!!
If you don't mind me asking, how was he with tummy time when he was younger? What did you notice that was different about his body? Movements?
His progress is incredible!!! That's absolutely terrific! Good on you Mama for being his biggest cheerleader. Hearing this is absolutely everything I need right now! Again, thank you!!!
Go him!!!!
honeydew / 7504 posts
I just sent in an application for an evaluation to our local EI provider. We think D has some sensory processing issues, so when I called our pediatrician, he recommended we start there rather than a private OT. The process for our area, as the provider explained to me, is that we send in the application, then they send us a letter letting us know they've received it. They review it and then the scheduler will call us when they have an opening.
It seems that D's biggest issues are auditory, tactile, and proprioceptive. He seems to become overwhelmed by something, and then he just meltsdown and spirals completely out of control. His meltdowns have become more dangerous (to himself - he bashed his head into his cubby at school the other day), so we're getting worried about his safety. Just hoping they can get us in soon and we can start addressing this!
ETA: Also in PA (Central)!
clementine / 955 posts
@Hgr2016: no it's totally fine! This site is actually the easiest place to tell people, since more people understand. He was referred by his ped at his 15 month appt. even though I knew before then something was wrong. He was referred for fine motor skill delay and a social/cognitive delay. ( no pointing or waving) he also only has 2 real words at 16months so I'm sure there will be a speech delay also.
pea / 11 posts
@Jackiedavis87: I know all about that mothers intuition and everyone saying the ole, "every child develops at their own Pace" line.
I know most people aren't sure what to say, I know I wasn't before all of this
I'm glad you're EI evaluation is scheduled. One thing, I feel much more hopeful with their support. It also helps me feel like I'm being proactive.
I'm sure we'll chat more!
nectarine / 2667 posts
I don't have a child in EI, but I do teach preschool for kids 2.5-5 years and @Jackiedavis87: question about feeling guilty from a few weeks ago made me want to ask you mamas something. How do you think an early childhood professional can help parents seek out EI services in a supportive way? My center frustrates me because myself and several teachers can clearly see young children (toddlers and two year olds) who could likely benefit from EI services, but no one ever pursues it with parents. I think a) the administration tells us the child is still young and will outgrow it and b) people are scared to offend a parent and/or don't know what to say. I usually feel awful because by the time the child comes to my class, the issues haven't resolved themselves & the child has aged into an age bracket that seems harder to qualify for/more difficult to schedule services. I think insight into how to have these convos with parents would help everyone.
@eimama: I'm also in Colorado and my background is with older kids in early childhood (3-8 yrs). Could you answer some questions for me? My understanding is that from birth to age 3, children get services from local EI centers and that over age 3 they go through ChildFind and the schools. I've also heard that it's easier to qualify for services if the child is under age 3. Is that true? Does a family need to seek out their personal school district or can they use a more conviently located one (like the district near their private preschool or daycare)? Will ChildFind help locate private therapists if using the school districts program won't work for the family because of scheduling? In your professional experience, is it better to have a family who may not see a huge problem initiate the process and be told their child doesn't qualify or to wait until Kindergarten to assess? Finally, what tools could you recommend for preschool/daycare teachers to get a feel for what is in the range of developmentally appropriate? I find parents don't always trust the teachers' professional opinions or don't want to acknowledge the issues and having "paperwork" can help (also, sometimes we teachers are just "off" in our assessment and having guidelines can help!). I use the Ages & Stages questionnaires often, but they can be difficult since I don't always see everything that a parent does. Thanks for reading!
pea / 6 posts
@joyfulkiwi I feel for you! What you described can be such a frustrating position to be in! First off I think there's a lot of fear around EI for parents because of the potential of being told something is different about their child's development, which far too many parents hear as "I did something wrong". Two very different messages with strong emotions attached. This is just my personal opinion but I feel that childcare centers often fear recommending an EI referral to families because of possible backlash. More times than not we find that so many parents truly don't know what is typical development and what is not, when the childcare professionals in their lives stay silent they are none the wiser.
To answer your questions: Regardless of age, the evaluation process is called Child Find. So for example, a 15 month old gets referred to EI (which would be the Community Center Board that serves their county of residence), an evaluation is scheduled with the Child Find team at their residing school district. Upon completion of the evaluation, a determination of whether or not the child is eligible or not is made and if so, then an IFSP is created. If a child is already 3 years old then they are referred directly to their residing school district where they are evaluated by the Child Find team. If they are determined eligible then they receive an IEP. For EI and school based services (3 and up) a child must go through either the CCB of the county they reside in or the school district where they reside. Unfortunately it cannot be based on what is closest or most convenient. This is due to how funding dollars are allocated.
Is it easier to qualify for EI than for school based services? Sort of, that's a bit of a loaded question. In EI you can qualify if you have a 25% delay in the following domains: motor, cognitive, social emotional, adaptive, communication. Each domain has a multitude of skills that fall within it. For example, say a 25 month old is struggling significantly with behavior- demonstrating aggression, inability to play with peers, frequent and intense tantrums (beyond age expected norms) this is their only concern and only delay, all other areas are appropriate- likely they would qualify for EI based in a social emotional delay. If a 3 year old presents with the same concerns it will be much much harder for them to be eligible for school based services because 1) you cannot qualify for behavior alone 2) you cannot qualify for delays in social emotional skills UNLESS you can prove that the social emotional delay is having such a significant impact that it is preventing the child from accessing their environment or preventing them learn. This is extremely difficult to prove and often requires a significant amount of data that the school nor family has. Also you can qualify for EI for adaptive delays such as feeding and sleep, that's not possible for school based services. So yes, it can seem "easier" to qualify for EI but it's also because the service model is different. EI is family, whole child based, school is academic based.
Child find teams may try to give parents other alternatives to seek help if children don't qualify. For EI they will make every effort to provide services to the child but parents do have to be willing to give sometimes. It is incredibly frustrating to have a family complaining about not receiving services but the only available time they've given is 5:30pm on Mondays. We're professionals and most keep "typical" hours. We often look at it like this, we will try to accommodate as much as we can but at the same time, you don't tell your doctor that you can only have an appt at 5:30 on Monday. You pick from the options given and make it work.
pea / 6 posts
@joyfulkiwi sorry I'm long winded! But passionate about this field and holy typos! I'm on my phone...to answer your remaining questions- I think it is ALWAYS better to refer earlier!!!! Better to not qualify than to show up in kindergarten to discover delays that could have been addressed years ago! I worked on a Child Find team for several years and the WORST evaluations were the ones done in April, May, June for kiddos entering kindergarten in the fall. We would always internally cringe and cry "why????!!!" for the kiddos that would qualify for services. They would definitely get services in kinder but had they come in earlier they would have gotten services earlier too which is never a bad thing in my opinion. As for screeners or tools, the ASQ is a good one to use. The parents should be the ones to fill it out. One thing I like about it is that is has the three different levels: refer, watch, and appropriate. (Pretty sure they use different words but that's the gist!) and you can visually show parents where their child falls on the scoring page. I would make sure to also use the ASQ- social emotional, it's a separate protocol from the other domains. I've used a screener in the past called First Steps which was decent. Does your center use Teaching Strategies Gold? That can be a great tool to show current development and the colored bands in that tool can really help parents see where their child is and should be. I honestly think a lot of conversations with parents is about approach. If you have concerns share them. Tell them, "this is what we see here at school, can you tell me more about what you see at home?" Try to get as much info as possible from the parents. If you're worried about a kiddo, share it, "I'm worried about Kayden, I'm seeing that he struggles with x,y, and z here at school. We want him to be successful and provide all the support we can for him. There's a service called EI which might be able to help or at least give us a really detailed picture of his development and strengths. Would you be interested in learning more?" I hope I was able to answer your questions! Good luck, you're in a tricky position far too often!
pear / 1717 posts
@Hgr2016: of course!!
Please feel free to unload on us here. We understand the fear and the feeling on not having control. Keep in mind you're doing all that you can do good for you!! Oh sweet!!! The PA I.E. system is pretty great. Give it time and I'm sure you'll find comfort in what goals they set out for your LO
nectarine / 2667 posts
@eimama: thank you so much! It's not long winded at all, it was all really helpful and I'm probably gonna to print it out to keep for reference at school! Thank you for the info on how it's structured. I know the "easier to qualify" is subjective, but what you described was what I was thinking (I.e. A 20 month old who has some behavioral issues could get services, but the same child who presents purely emotional/behavioral issues at age 3 might not). I agree that it's very tricky to approach parents because of backlash and, unfortunately, I think not many daycare/preschool teachers know how to approach these conversations. I've worked in public schools to teach K-2nd and got to be part of parent meetings with some truly amazing professionals. I wonder if EI specialists in our county could do a professional development about how to talk with parents? We had one at our center in the past that talked about the importance of EI, but not how to approach it. I will definitely look into all those tools as well. I've seen the Social-Emotional ASQ, but not the rest. Thank you again, I feel passionate about this too. I've had those kids in 2nd grade who are beyond struggling and it's heartbreaking. It pains me to see some kiddos who are 1, 2, or 3 and know they could be getting support to avoid those struggles. Sometimes the best we can do is advise the family on how to advocate for their child come Kindergarten so that it's not April before services begin.
pea / 11 posts
Happy Easter to all who celebrate!! My mantra today, I will stay in the moment!
apricot / 317 posts
@Hgr2016: He adored tummy time from a very early age. It was much, much easier for him to be on his tummy than on his back due to the nature of his swallowing problems (which we didn't fully understand until he had a swallow study after his CP diagnosis). He had limited movement, which we really didn't realize until he was close to 4 months old, when he wasn't able to grab toys/shake rattles, etc. He could be placed in a sitting position and maintain it really early, but couldn't get into the position himself. He could "flip" his body over from about 2.5 weeks old, but lost the ability right around 4 months - when babies often start to roll on purpose. His symptoms were inconsistent, which made them harder to describe to his doctor...he was frequently stiff, but not always. Sometimes he could reach for a toy in his lap - but only rarely. Socially, emotionally, and cognitively, he seemed to be developing well. He qualified for EI at 6 months for stiffness in his shoulders and hips and actually started therapy at 7 months. His diagnosis of CP was at 12 months, and his CP was considered to be moderate (currently, it is considered mild). The symptoms of CP can often improve over time if therapy is started early enough. I certainly would not have predicted that he would be where he is now, physically speaking.
apricot / 317 posts
One thing I wanted to add is that it's really hard to watch friends' babies reach milestones so much earlier than DS2. I know that many of the babies DS2 is in daycare with are so much further along than he is, especially with speech, that I get discouraged. I try not to, because I know how much he's learned and that we have a long way to go :)...but still!
clementine / 955 posts
@tlynne: I think all us (future)EI mamas have this same feeling, I know I do. Anytime I get DS around a child his age I almost always come home and cry a little bit because it's so hard to see sometimes. I just keep telling myself that I'm doing everything I can to make it better, if I could ever get to his eval date lol. 2 weeks to go!
Your doing the best job you can, and that's all anyone can ask for.
blogger / wonderful cherry / 21628 posts
I have a question about the process. DD was referred for speech. She has 3 words other than mama and Dada at 18 months and doesn't ever try to mimic what anyone says. Anyways her pediatrician thinks she's right on the line for being delayed. So far I have spoken to EI and given them DD's date of birth and my insurance information. The lady I spoke to said I would receive a call in 5-10 business days from a coordinator who would ask some questions and then schedule an in home visit. What should I expect during that phone call? Is there any information about DD I should write down and have handy?
clementine / 955 posts
@Mrs. Pickle: I just did this! When the coordinator called she asked what DS was being referred for, so I just listed all the things my ped said, plus the things I had noticed. She made a decision based off what I said as to who she would be bringing with her to the eval. Other than that it was just schedualing the eval, which for me was set 4weeks later(may 3). Maybe someone else can chime in about the actual eval, since I haven't made it that far yet.
blogger / wonderful cherry / 21628 posts
DD's evaluation is scheduled for May 31st. Such a long wait! I knew it would be a few weeks though.
clementine / 955 posts
I just want to start by thanking everyone for thier support on this forum, you ladies have been so much help to me. Yesterday DS had his evaluation. I was told by the case worker that in the state of Texas you need to be behind 25 percent in some areas and 35 percent in some, it apparently depends on the actual area. So DS is 16 months and his adjusted age is 15 months, so he would need to be at a 11.5 month level to qualify for services. His scores came back between 12.5 and 14 months in every area except eating/drinking. They call it some long word, but not self feeding is essentially what it is, in that area he is a 9 month old. Now here's the kicker, the services would cost 557$ a month. They would bill the insurance first, but I still have 3000 left to meet on my deductible, and even then They would only cover 50 percent after that. the case worker told me that I could honestly probably get private care for less. What I ended up with was some good tips I could use to get DS to start feeding himself. She also told me that I had 90 days to change my mind, since I refused services. So that gives me some leeway to see if he's improving. Literally though in the past month since I made the apt. To when it actually happened he's made a ridiculous amount of progress in all areas. He's walking now, his pincher grasp is "perfect" (the therapist said) he has 5 words, knows who people are. I now feel like maybe I didn't give him enough time. I forget sometimes that he screamed bloody murder for the first 6 months of his life. So by the time other babies were starting to explore, he was just learning what the floor was, since he was literally held 24/7 for the first 6 months of his life. Time will tell if his development continues steadily, but for now I have some peace of mind, and having him evaluated was 100 percent worth that.
persimmon / 1095 posts
@arosebyany: Glad to hear it went well. The price is insane though. I am a resident of Texas, but living in Maryland (military) and the difference is horrible. DS is only 25% behind, but they have never even asked about payment. If the price was that bad, I probably would have declined services as well. I think when DS does another evaluation in a month at 32 months (preparation for transition out of EI), he will no longer qualify for services.
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